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Could this still be adrenal insufficiency despite a normal ACTH stim test?
Sorry for the book ahead of time, but my case is complicated.
So, I thought I finally had my answer and the doc taking care of me in the hospital was 70% sure this was it: adrenal insufficiency. I was very happy to finally have a diagnosis that would explain my symptoms and lead to actual treatment so that I could have my life back, but it turns out a may not have the diagnosis after all.
My morning cortisol level was the following while I was hospitalized:
Cortisol at 6am-2.1 mcg/dL
We all know that level is not normal. However, since then, my morning cortisol levels have been normal at 15 and 18, both taken at 9 am on two separate days. My aldosterone level was pretty much nonexistent (only 1) at 9 am though , and I am having a repeat cortisol and aldosterone test Monday morning because of my abnormal aldosterone and prior abnormal cortisol in the hospital.
However, I was told by my physician that my ACTH stim test was not only normal, but robust. I do not have the actual numbers yet.
Why I was admitted to the hospital:
Diffuse abdominal pain. Severe vomiting. Diarrhea. This turned into a BP going into the 70s/50s once I got onto the floor. After many fluid boluses, my BP stayed in the 80s/50s for a day and a half long after the vomiting had ceased. My HR fell to 50 and did not compensate my low BP. All I did was mainly sleep during my hospital stay. My BP and HR returned back to baseline and I was discharged without medication because the endocrinologist wanted to do more testing. The only thing out of whack was my WBC (docs think it was a stress response, not an infection, as it goes up with every one of these episodes), and my transferrin and iron binding capacity, of which I received a bag of iron. And, of course, the cortisol level.
I had to be watched in the hospital one other time previously overnight because of these symptoms and have had multiple ED visits. My BP has since been 90 systolic since my last hospital stay. It has been normal other times. It seems I’m truly having intermittent hypotension.
Since the last hospitalization, I have been back to the ED once. I had a near passing out episode where my vision went completely black, but I could still hear. Thankfully, I was laying down when it happened. I promptly vomited after I nearly passed out, so off to the ED I went…again. They gave me 2 liters of fluid in the ED and sent me home.
My salt has always been 134-135, but has gone up to 140 because I make a point to eat a ton of salt. I have never had high potassium levels.
Symptoms I’ve had:
Wt loss (decrease by 16 lbs.; have been able to gain 5 back with careful dieting), nausea every day, intermittent vomiting periods, constipation, dizziness, intermittent headaches, and brain fog, abdominal pain and swelling, debilitating fatigue and weakness (been getting worse since January; had to go out of work on Feb 20), and joint pain without outward signs of inflammation. Some days I’ve felt like I was going to collapse and die. Others, like today, I feel less crappy, but still not normal.
I have seen a rheumatologist and GI doc. I’ve had a colonoscopy, endoscopy, CT colonography, MRCP, ultrasounds, CT scans, stool testing, Lyme disease testing, TSH, celiac disease, all kinds of rheumatology tests etc. I am having sx for an ovarian cyst removal on May 23. It is 3 cm. CT colonography only showed gaseous distention of the small bowel. Everything else has been completely normal.
I was a functioning, working adult prior to this. I would like to return to “my old normal” if possible and am just looking for clues. Any help or information would be much appreciated. I just don’t understand why my AM cortisol was that low in the hospital when I was that sick. I also don’t understand why my HR didn’t kick up with that low pressure.
Has anyone experienced or heard of anything like this? Is it still possible that this is true adrenal insufficiency and my adrenals are in a stage where they’re only working somewhat when they feel like it? Have my labs not completely "caught up" all the way? Has anyone ever gone on a therapeutic trial of hydrocortisone just to see if their symptoms improved? Should I even ask? I’m concerned about my upcoming surgery if this could possibly be adrenal insufficiency.
My father also has adrenal insufficiency.
Thanks in advance.
So, I thought I finally had my answer and the doc taking care of me in the hospital was 70% sure this was it: adrenal insufficiency. I was very happy to finally have a diagnosis that would explain my symptoms and lead to actual treatment so that I could have my life back, but it turns out a may not have the diagnosis after all.
My morning cortisol level was the following while I was hospitalized:
Cortisol at 6am-2.1 mcg/dL
We all know that level is not normal. However, since then, my morning cortisol levels have been normal at 15 and 18, both taken at 9 am on two separate days. My aldosterone level was pretty much nonexistent (only 1) at 9 am though , and I am having a repeat cortisol and aldosterone test Monday morning because of my abnormal aldosterone and prior abnormal cortisol in the hospital.
However, I was told by my physician that my ACTH stim test was not only normal, but robust. I do not have the actual numbers yet.
Why I was admitted to the hospital:
Diffuse abdominal pain. Severe vomiting. Diarrhea. This turned into a BP going into the 70s/50s once I got onto the floor. After many fluid boluses, my BP stayed in the 80s/50s for a day and a half long after the vomiting had ceased. My HR fell to 50 and did not compensate my low BP. All I did was mainly sleep during my hospital stay. My BP and HR returned back to baseline and I was discharged without medication because the endocrinologist wanted to do more testing. The only thing out of whack was my WBC (docs think it was a stress response, not an infection, as it goes up with every one of these episodes), and my transferrin and iron binding capacity, of which I received a bag of iron. And, of course, the cortisol level.
I had to be watched in the hospital one other time previously overnight because of these symptoms and have had multiple ED visits. My BP has since been 90 systolic since my last hospital stay. It has been normal other times. It seems I’m truly having intermittent hypotension.
Since the last hospitalization, I have been back to the ED once. I had a near passing out episode where my vision went completely black, but I could still hear. Thankfully, I was laying down when it happened. I promptly vomited after I nearly passed out, so off to the ED I went…again. They gave me 2 liters of fluid in the ED and sent me home.
My salt has always been 134-135, but has gone up to 140 because I make a point to eat a ton of salt. I have never had high potassium levels.
Symptoms I’ve had:
Wt loss (decrease by 16 lbs.; have been able to gain 5 back with careful dieting), nausea every day, intermittent vomiting periods, constipation, dizziness, intermittent headaches, and brain fog, abdominal pain and swelling, debilitating fatigue and weakness (been getting worse since January; had to go out of work on Feb 20), and joint pain without outward signs of inflammation. Some days I’ve felt like I was going to collapse and die. Others, like today, I feel less crappy, but still not normal.
I have seen a rheumatologist and GI doc. I’ve had a colonoscopy, endoscopy, CT colonography, MRCP, ultrasounds, CT scans, stool testing, Lyme disease testing, TSH, celiac disease, all kinds of rheumatology tests etc. I am having sx for an ovarian cyst removal on May 23. It is 3 cm. CT colonography only showed gaseous distention of the small bowel. Everything else has been completely normal.
I was a functioning, working adult prior to this. I would like to return to “my old normal” if possible and am just looking for clues. Any help or information would be much appreciated. I just don’t understand why my AM cortisol was that low in the hospital when I was that sick. I also don’t understand why my HR didn’t kick up with that low pressure.
Has anyone experienced or heard of anything like this? Is it still possible that this is true adrenal insufficiency and my adrenals are in a stage where they’re only working somewhat when they feel like it? Have my labs not completely "caught up" all the way? Has anyone ever gone on a therapeutic trial of hydrocortisone just to see if their symptoms improved? Should I even ask? I’m concerned about my upcoming surgery if this could possibly be adrenal insufficiency.
My father also has adrenal insufficiency.
Thanks in advance.
This is classic Addison’s disease. You experienced Addison’s crisis in the hospital. Are you unusually tan/orange? Discolored gums?
All of your symptoms are text book Addison’s. Daily prednisone supps should take care of it.
There is no reason for u to go undiagnosed. Its an autoimmune disease so it may take years for your adrenals to atrophy.
All of your symptoms are text book Addison’s. Daily prednisone supps should take care of it.
There is no reason for u to go undiagnosed. Its an autoimmune disease so it may take years for your adrenals to atrophy.
There are home tests you can do. I did two of three (didn't have a blood pressure machine at the time). My results - pupils fluctuating so fast it was less than a second between fluctuations and the white line on my belly (used the end of a pen or spoon) turned bright white and spread over 2 inches. My reasons for adrenal fatigue/insufficiency was severe vitamin B12 deficiency and then another time due to a two month bout of being very hyperthyroid. It took 18 months for these symptoms to improve after correcting B12 deficiency and 7 months after hyperthyroidism. So you could try the tests below to see what your results are. Just to add, I had a 25 cm ovarian cyst that needed to be removed. I had an insane amount of fluid from this condition (I gained 10 kg of fluid overnight!) and was SO tired I almost fell asleep driving! I also sometimes could not stand up due to pressure from the cyst. 3cm sounds so small! :)
"Adrenal Function Tests You Can Do at Home
ADRENAL FUNCTION TEST #1- Postural Hypotension
Postural hypotension (also known as orthostatic hypotension) is a drop in blood pressure that occurs upon rising from a horizontal position. It is commonly expressed as a feeling of dizziness or lightheadedness, a "head rush", or "standing up too fast".
To do this test, you will need a blood pressure cuff. Lie down and rest for 5 minutes. Take a blood pressure reading while still horizontal. Then, stand up and take another reading.
Normally, your blood pressure should rise 10-20 points. If it drops, particularly by 10 points or more, hypoadrenia is indicated. Generally, the bigger the drop, the greater the adrenal insufficiency.
It should also be mentioned that low blood pressure in general is also an indicator of exhausted adrenals when present in conjunction with the other symptoms of adrenal gland fatigue.
ADRENAL FUNCTION TEST #2-Iris Contraction Test
For this test you will need a weak flashlight or penlight, and a mirror. In a dark bathroom or closet, wait a minute for your eyes to adjust to the dark. This will allow your pupils to dilate (open) fully. Then, shine the flashlight into your eyes, and watch the reaction of your pupils for at least 30 seconds.
The light should cause your iris to contract, making your pupils (the dark spot in the center of your eye) smaller. Normally, they should stay that way, but if you have adrenal gland fatigue, the iris will be weak and will not be able to hold the contraction, it will either waver between contracted and relaxed, or will contract initially, but then open up after 10-30 seconds.
As with the postural hypotension test, the degree to which you "fail" this test is an indicator of the degree of adrenal insufficiency you are experiencing
ADRENAL FUNCTION TEST #3-Sergent's Adrenal White Line
With your fingernail or the dull end of a spoon, draw a line across your belly. In moderate to severe cases of adrenal fatigue, the line will stay white, and even get wider over the course of time, while a "normal" reaction would be for the line to almost immediately turn red.
This test has historically been used to indicate severe adrenal fatigue and Addison's Disease. Milder cases of adrenal fatigue may not exhibit this sign."
"Adrenal Function Tests You Can Do at Home
ADRENAL FUNCTION TEST #1- Postural Hypotension
Postural hypotension (also known as orthostatic hypotension) is a drop in blood pressure that occurs upon rising from a horizontal position. It is commonly expressed as a feeling of dizziness or lightheadedness, a "head rush", or "standing up too fast".
To do this test, you will need a blood pressure cuff. Lie down and rest for 5 minutes. Take a blood pressure reading while still horizontal. Then, stand up and take another reading.
Normally, your blood pressure should rise 10-20 points. If it drops, particularly by 10 points or more, hypoadrenia is indicated. Generally, the bigger the drop, the greater the adrenal insufficiency.
It should also be mentioned that low blood pressure in general is also an indicator of exhausted adrenals when present in conjunction with the other symptoms of adrenal gland fatigue.
ADRENAL FUNCTION TEST #2-Iris Contraction Test
For this test you will need a weak flashlight or penlight, and a mirror. In a dark bathroom or closet, wait a minute for your eyes to adjust to the dark. This will allow your pupils to dilate (open) fully. Then, shine the flashlight into your eyes, and watch the reaction of your pupils for at least 30 seconds.
The light should cause your iris to contract, making your pupils (the dark spot in the center of your eye) smaller. Normally, they should stay that way, but if you have adrenal gland fatigue, the iris will be weak and will not be able to hold the contraction, it will either waver between contracted and relaxed, or will contract initially, but then open up after 10-30 seconds.
As with the postural hypotension test, the degree to which you "fail" this test is an indicator of the degree of adrenal insufficiency you are experiencing
ADRENAL FUNCTION TEST #3-Sergent's Adrenal White Line
With your fingernail or the dull end of a spoon, draw a line across your belly. In moderate to severe cases of adrenal fatigue, the line will stay white, and even get wider over the course of time, while a "normal" reaction would be for the line to almost immediately turn red.
This test has historically been used to indicate severe adrenal fatigue and Addison's Disease. Milder cases of adrenal fatigue may not exhibit this sign."
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