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Very very very low cortisol, less than 1 in the morning, what does this mean?
I have had symptoms for two years of severe fatigue, headaches, muscle pain, muscle weakness, very thirsty all the time, etc. Exercise makes it worse, not better. My endo just tested my cortisol and it is less than 1 when tested in the morning. She said normal is at least a minimum of 6. What does this mean? She thinks I could have hypopituitarism. My pituitary is a little enlarged on an MRI. She just had me go friday for an ATCH stimulation test. What does this low cortisol mean? Please help!
This may help you understand symptoms that may occur:
Symptom History
Ever since I was young, I would get sick to my stomach after eating. Once I got out of high school, I had flu-like symptoms that began to grow in severity and frequency. The Dr.'s most the time would just prescribe antibiotics and say there was no temperature or anything relating to a cold or flu. Most of the time my temperature was in the low 97 range, so one Dr. (Endocrinologist) tested me for thyroid issues and found non. By the mid 1980's the symptoms were increasing and physical stress from working out daily often brought on a 'flu'. I got dehydrated often, as I do today, and holding in any water in was tough. Going to the bathroom 5 times per night was common, and several times during the day. I was beginning to think I had some bug that was persistent. In the late 80's, I ended up in emergency on a couple of occasions with the severe flu-like symptoms and was helped by IV's. Often tremendous weakness and muscle aches stopped me from doing things. In 1990 I took a missionary trip to Argentina. The flight was long. Upon arriving I was tired and totally exhausted from the trip. I felt like I had a hangover (this is quite normal for the onset and a couple of days after recovery). After two days, I got very weak all within an hour period of time, had a severe headache, was throwing up, had severe diarrhea, and muscle fatigue making it hard to walk. I was brought into my hosts house and went through a “flu” that can be described as at least 3 times greater in intensity than a normal flu. I didn't have any temperature and they couldn't understand this. Finally, after several hours I fell asleep and didn't wake until the following night, over 24 hours later. I woke up very sick and it it took two days to feel good enough to get around. I never did recover on the two week trip, as I was very weak and had to sit most the time due to exhaustion. Upon arriving home I was hospitalized with severe dehydration, low sodium, and very low blood pressure. After being released, for about a month I threw up daily, had diarrhea, and was in general very sick. I was tested for tropical bugs, malaria and a host of other things. Of course I did have full immunizations before going to Argentina. The Dr's were confused because nothing added up. Before this trip, I had the same things happen, but after the trip it took most of a month before I was normal, or somewhat normal again. Then I flew East often for work and on after arriving I would get very sick either the night of arriving, or about 8 hours afterwards. On a couple of occasions I ended up in emergency. In 1992, I had another strong reaction, and my wife told me I had woken a couple of times for a short time, and didn't fully awake for three days. The symptoms were the same as before. We soon found out that I needed quite a bit of sodium, calcium, and magnesium as these were they only things that at least made me feel somewhat better. I also had to be carried part way out of the woods at a camping trip in Forks Wa because I got so sick I couldn't walk. At this point, I started down a path of many Dr's looking at just about everything they could think of. Finally in 1994, I found Dr. Corell who believed I needed the ACTH testing. He administered 10mg of Cortisone, most of the symptoms became very in frequent, but low BS was persistent. However, I would continue to get sick again, if I went hiking for more than an hour, and did any workouts that were stressful. This happens many times/year. Last year my wife and I climbed a 2000' climb over a steep incline and a logged off area. After arriving back at the camp, I started to feel the symptoms come on, and within less than 30 minutes I was facing very strong flu-like symptoms. I threw up and couldn't move my head to throw up. This time it felt like I was going to die. My wife was able to get 40mg of cortisone down and some salt, which I threw up. She got some more down, then within an hour I could feel the energy return to me. She was going to call for help, but we were to far from any major towns. The past Dr's told us that when an adrenal crisis comes on, to take a minimum of 40mg and add more if you don't feel better within about one hour. You then continue to take double the normal dose until you feel normal again. Then you can drop it down to normal as soon as possible since the adrenals don't work, and cortisone regulation is done orally. I was able to finally sleep, though for three days after I still had the typical very strong 'hangover'. The endocrinologist Dr. Hersen did prescribe me some shots to carry if this happened again. I filled the prescription once. In the past the Dr's told me to take 5 mg of cortisone prior a strong workout since the additional 50% boost doesn't happen from the adrenals. Now when I do any major hikes, I take a small amount before the hike, and the problems are rare afterwards. At least four times in the past two months, as I have been reducing the cortisone for the testing, I have had the flu-like symptoms over night that were unbearable. They came on so quick, I failed to take extra Cortisone before hand. Also it is interesting to note, that I rarely get viruses or bacterial infections especially after I started the cortisone several years back. I also don't get severely dehydrated like I used to, though it is still difficult to hold in water after drinking it. If I drink it with a small amount of sodium, it doesn't run through me quite as quickly. My weight stays low, and even at 49 I don't gain unless I eat a lot.
Symptom History
Ever since I was young, I would get sick to my stomach after eating. Once I got out of high school, I had flu-like symptoms that began to grow in severity and frequency. The Dr.'s most the time would just prescribe antibiotics and say there was no temperature or anything relating to a cold or flu. Most of the time my temperature was in the low 97 range, so one Dr. (Endocrinologist) tested me for thyroid issues and found non. By the mid 1980's the symptoms were increasing and physical stress from working out daily often brought on a 'flu'. I got dehydrated often, as I do today, and holding in any water in was tough. Going to the bathroom 5 times per night was common, and several times during the day. I was beginning to think I had some bug that was persistent. In the late 80's, I ended up in emergency on a couple of occasions with the severe flu-like symptoms and was helped by IV's. Often tremendous weakness and muscle aches stopped me from doing things. In 1990 I took a missionary trip to Argentina. The flight was long. Upon arriving I was tired and totally exhausted from the trip. I felt like I had a hangover (this is quite normal for the onset and a couple of days after recovery). After two days, I got very weak all within an hour period of time, had a severe headache, was throwing up, had severe diarrhea, and muscle fatigue making it hard to walk. I was brought into my hosts house and went through a “flu” that can be described as at least 3 times greater in intensity than a normal flu. I didn't have any temperature and they couldn't understand this. Finally, after several hours I fell asleep and didn't wake until the following night, over 24 hours later. I woke up very sick and it it took two days to feel good enough to get around. I never did recover on the two week trip, as I was very weak and had to sit most the time due to exhaustion. Upon arriving home I was hospitalized with severe dehydration, low sodium, and very low blood pressure. After being released, for about a month I threw up daily, had diarrhea, and was in general very sick. I was tested for tropical bugs, malaria and a host of other things. Of course I did have full immunizations before going to Argentina. The Dr's were confused because nothing added up. Before this trip, I had the same things happen, but after the trip it took most of a month before I was normal, or somewhat normal again. Then I flew East often for work and on after arriving I would get very sick either the night of arriving, or about 8 hours afterwards. On a couple of occasions I ended up in emergency. In 1992, I had another strong reaction, and my wife told me I had woken a couple of times for a short time, and didn't fully awake for three days. The symptoms were the same as before. We soon found out that I needed quite a bit of sodium, calcium, and magnesium as these were they only things that at least made me feel somewhat better. I also had to be carried part way out of the woods at a camping trip in Forks Wa because I got so sick I couldn't walk. At this point, I started down a path of many Dr's looking at just about everything they could think of. Finally in 1994, I found Dr. Corell who believed I needed the ACTH testing. He administered 10mg of Cortisone, most of the symptoms became very in frequent, but low BS was persistent. However, I would continue to get sick again, if I went hiking for more than an hour, and did any workouts that were stressful. This happens many times/year. Last year my wife and I climbed a 2000' climb over a steep incline and a logged off area. After arriving back at the camp, I started to feel the symptoms come on, and within less than 30 minutes I was facing very strong flu-like symptoms. I threw up and couldn't move my head to throw up. This time it felt like I was going to die. My wife was able to get 40mg of cortisone down and some salt, which I threw up. She got some more down, then within an hour I could feel the energy return to me. She was going to call for help, but we were to far from any major towns. The past Dr's told us that when an adrenal crisis comes on, to take a minimum of 40mg and add more if you don't feel better within about one hour. You then continue to take double the normal dose until you feel normal again. Then you can drop it down to normal as soon as possible since the adrenals don't work, and cortisone regulation is done orally. I was able to finally sleep, though for three days after I still had the typical very strong 'hangover'. The endocrinologist Dr. Hersen did prescribe me some shots to carry if this happened again. I filled the prescription once. In the past the Dr's told me to take 5 mg of cortisone prior a strong workout since the additional 50% boost doesn't happen from the adrenals. Now when I do any major hikes, I take a small amount before the hike, and the problems are rare afterwards. At least four times in the past two months, as I have been reducing the cortisone for the testing, I have had the flu-like symptoms over night that were unbearable. They came on so quick, I failed to take extra Cortisone before hand. Also it is interesting to note, that I rarely get viruses or bacterial infections especially after I started the cortisone several years back. I also don't get severely dehydrated like I used to, though it is still difficult to hold in water after drinking it. If I drink it with a small amount of sodium, it doesn't run through me quite as quickly. My weight stays low, and even at 49 I don't gain unless I eat a lot.
1 Comments
Wow, what a story! I have been struggling with fatigue, muscle weakness, shortness of breath, tingly lips, almost passing out, etc., for about 6 months. It became markedly worse during/after a bout of pneumonia I got on Thanksgiving. I was sleeping up to 22 hrs/day but never felt rested. The leg weakness has gotten so bad I can barely walk, yet docs kept blaming the pneumonia, saying it takes time to get well. My ortho insisted I use a cane when he saw how wobbly I was (at an unrelated appt).. I am only 44 and virtually housebound, sleeping my life away, wth! FINALLY, my regular doc took me seriously when I said, it has been since Thanksgiving that I could even walk across my home or take my 5 yr old to school. I cannot LIVE like this anymore! He ran a battery of tests, and the one that popped up was morning cortisol, which was less than 1. That IS pretty darn low, right? So I got a message that my cortisol was --a little low-- but that it could be from the steroids I had taken at Thanksgiving to help my pneumonia. 2 months later?? Doubtful. Now that I am reading these stories, it is clicking. People thought I was being a drama queen when I griped that any exercise wiped me out. It took me FOREVER to heal (energy wise) from an hour-long back surgery last year. Makes me wonder how long this has been going on. Also, for several years, MRIs have shown a mass on or above my kidney, but it was small--so docs have always ignored it. Hmm. Any advice?
Here is a history of the diagnoses. It was very long and drawn out. It took about 6 years. It sounds like you are on the right track!
Diagnoses
Years ago as we were sorting out what was causing the problems, I was diagnosed with blood sugar issues, chronic fatigue syndrome, allergies, and other things. Finally, through an Endocrinologist, some things began to surface. First of all, they ran blood sugar tests along with insulin and found out that my insulin was 3x over the normal range when stimulated through a 5 hr Glucose Tolerance test. The first test showed bs up to 185 and I might have diagnosed me with diabetes had it not been for the longer test. It went back down to 45 in 2.5 hrs. My Dr. Then told me that reactive HG was the diagnosis, but this in itself was only a symptom of something else out of balance. He felt that it was Cortisol related. He sent me through a series of tests, the standard ACTH stimulation, the 48hr ACTH stimulation with 2 24hr urine samples, and finally a saliva test from Diagnos Techs, prior to ever taking a steroid. He was one of the few MD's who used the saliva test, but believed that it helped fine tune medication timing and showed an accurate picture of the Cortisol over time. The ACTH stimulation showed levels that were far below the 18 resting level which I was told was typically the low end on non stimulated Cortisol levels. The other urine test showed a suppressed average level the first 24hr period, and it actually went 50% lower after the stimulation, just like the test I had recently receeded back down at the 60min period. The Dr. Said he had experienced this on a few occasions in the past, and further testing gave the same results. The aldosterone also was on the low side. The Dr. Informed me that it was the percent of rise after the stimulation that was the bigger concern, not the starting value, though it was very low also. They also measured ACTH in the blood at the 0 minute test. I do remember that the initial Cortisol values were much lower than 18 and the rise wasn't close to 50%, and sometimes went backwards at 60min. They were unable to get Cortisol levels to rise very high. The other things that we noticed was very high BUN, sodium at 35 and below on several tests, and other minerals out of the normal range. After this point, they put me on 10mg of cortisone. The affect was dramatic, and I felt better within a few hours. Over time however, the symptoms began to return, so they increased the Cortisol and told me to take additional when stress hits and the symptoms start.
Diagnoses
Years ago as we were sorting out what was causing the problems, I was diagnosed with blood sugar issues, chronic fatigue syndrome, allergies, and other things. Finally, through an Endocrinologist, some things began to surface. First of all, they ran blood sugar tests along with insulin and found out that my insulin was 3x over the normal range when stimulated through a 5 hr Glucose Tolerance test. The first test showed bs up to 185 and I might have diagnosed me with diabetes had it not been for the longer test. It went back down to 45 in 2.5 hrs. My Dr. Then told me that reactive HG was the diagnosis, but this in itself was only a symptom of something else out of balance. He felt that it was Cortisol related. He sent me through a series of tests, the standard ACTH stimulation, the 48hr ACTH stimulation with 2 24hr urine samples, and finally a saliva test from Diagnos Techs, prior to ever taking a steroid. He was one of the few MD's who used the saliva test, but believed that it helped fine tune medication timing and showed an accurate picture of the Cortisol over time. The ACTH stimulation showed levels that were far below the 18 resting level which I was told was typically the low end on non stimulated Cortisol levels. The other urine test showed a suppressed average level the first 24hr period, and it actually went 50% lower after the stimulation, just like the test I had recently receeded back down at the 60min period. The Dr. Said he had experienced this on a few occasions in the past, and further testing gave the same results. The aldosterone also was on the low side. The Dr. Informed me that it was the percent of rise after the stimulation that was the bigger concern, not the starting value, though it was very low also. They also measured ACTH in the blood at the 0 minute test. I do remember that the initial Cortisol values were much lower than 18 and the rise wasn't close to 50%, and sometimes went backwards at 60min. They were unable to get Cortisol levels to rise very high. The other things that we noticed was very high BUN, sodium at 35 and below on several tests, and other minerals out of the normal range. After this point, they put me on 10mg of cortisone. The affect was dramatic, and I felt better within a few hours. Over time however, the symptoms began to return, so they increased the Cortisol and told me to take additional when stress hits and the symptoms start.
my cortisol is 3.4 in the morning
doc diagnosed me with under-active thyroid but I'm skinny???
doc diagnosed me with under-active thyroid but I'm skinny???
Me too, I had the same cortisol reading in the morning, and have been put on a low dose of Armour thyroid. I too am not fat, but I find if I gain any weight that it is always around the middle section. I also suffer from hypoglycemia and have low progesterone. I am currently taking progesterone supplements. I am told that progesterone and cortisol are competing for resources in the body so that if one is low than the other is likely to be low too. I also know that cortisol and the thyroid are interrelated. I get tested again in mid january to see if any of this is working. So far I feel mildly better, but suspect I have more dose tweaking to do. Any suggestions would be helpful.
I'd suggest sking about NP Thyroid by acella---it is very similar to what the original formula of armour used to be. armour now has too much cellulose in it--it is possible the thyroid medication may not absorb as well because of it.
I have adrenal insufficiency---I had lost a ton of weight before I was diagnosed. I also have problems with hypoglycemia--but it seems to be better since I have been put on hydrocortisone.
I had all kinds of hormones that were off and i was too low in a number of vitamins and minerals also---my doctor did extensive blood work.
Low thyroid and low cortisol often go together.
I have adrenal insufficiency---I had lost a ton of weight before I was diagnosed. I also have problems with hypoglycemia--but it seems to be better since I have been put on hydrocortisone.
I had all kinds of hormones that were off and i was too low in a number of vitamins and minerals also---my doctor did extensive blood work.
Low thyroid and low cortisol often go together.
Hi! I just read your post & I too have been suffering for years. Back in 2011 I went to a endocrinologist, did blood work & told me "there is nothing wrong with you, you're going through menopause" where his exact words. So, here it is late 2012, still suffering with the same stuff, so I call his office & ask for a copy of the lab reports. Low & behold .. it showed my Cortisol at 0.6 (very low), ALSO in 2011 my FAMILY doc had done blood work & it showed my DHEA 88 LOW. ALSO, in 2011 I had been put on Prednisone (for a severe infection in my foot) & that was like a MIRACLE! I had never felt better! The brain was thinking clearly, my clothes where getting loose etc. I even went back to the doctor wanting MOORE Prednisone!, but I got a no... In 2012 I have seen 3 Gastrologist & my doctor thinks I'm crazy. So, I had a tantrum in her office & showed her the 2011 blood test with my low Cortisol & she didn't think anything of it... but I demanded to be tested and guess what, now my Cortisol is super high. (I don't have the test results, but they called me & said I need to see a endocrinologist). Ever since I was 13 years old I have battled with my weight etc. ALL of my family members are tall & thin. As a kid I would eat salt, just pour it in my mouth or slather it on a piece of bread, I still eat a lot of salt, (sodium levels are just above normal) plus I have always drank a lot of liquids. With what you have been through do you have any advice or how I can get the doc to listen to me? I see the new endo doc on 2/1/2013, I wish it was sooner ..... I need help
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