Aa
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?
OK, your numbers do look low, but I am no Dr. I was diagnosed with adrenal insufficiency years ago. I can't find the old tests prior to taking any cortisone or I would post them. However, here is a link you might want to look at that explains the test:
http://www.acthstimulationtest.com/interpretation
I just had the testing this week again, and here are the results. Mind you, I dropped cortisone down to 15mg from 25-30/day:
9:00am Test
Resting ACTH - 52
Cortisol
0min - 12.1
30min - 15.0
60min - 17.5
3:00pm Test (I was told this was invalid due to the time of the day, nevertheless, it shows a very sluggish response)
Baseline 3.4
30 Min 8.6
60 6.1
The endo did seem concerned and told me to get back on Cortisone, 15mg morning, 5mg noon, 5mg 4-5PM, immediately.
Notice that my baseline in the afternoon was lower than in the morning. This is because the body requires high amounts in the morning, and supposedly, pumps up a 2nd smaller shot in the afternoon. The interesting thing is that the number never doubles in 30 or 60min. Primary adrenal insufficiency will show high resting ACTH levels. You want to get an ACTH draw before the 0, 30, and 60 min Cortisol draws. If the ACTH is in the beginning, it says that the Adrenals are not responding to the ACTH telling them to put out more Cortisol. This is primary AI. Secondary is a result of the Pituitary putting out to little ACTH. If you had this, the initial ACTH value would be low, and the stimulation would pump the Cortisol levels double and above. The renin values are high, this suggests lack of aldosterone which regulates minerals in your blood. If I drink plain water, more than a glass, I will go to the bathroom every 1/2 hour for about 2 hrs. You also get mineral deficient, so it is important to take mineral replacment.
Which ever one you have, they are both dangerous. To show this, I will post my history and the stuff I went through. It was the most frustrating thing to go through for several years. People called me hypochondriac. Dr's said is was in my head, and I had to fight for answers all the way. Don't give up if you are not getting the attention you need.
By the way, many times when you have this condition, your blood sugars will be low. The only remedy I have found for this is to eat often, keep away from any sugars (fruits and all), stay away from foods that say "no sugar". This is a technical FDA term. Stay away from starchy vegetables and grains. Eat higher complex carbohydrates, proteins, and moderate vegetable fats. Sometimes this is what you need to do to feel that extra 15% better.
Hopefully, this and the next post will help you out. There is another great resource at:
http://www.addisonssupport.com/
http://www.acthstimulationtest.com/interpretation
I just had the testing this week again, and here are the results. Mind you, I dropped cortisone down to 15mg from 25-30/day:
9:00am Test
Resting ACTH - 52
Cortisol
0min - 12.1
30min - 15.0
60min - 17.5
3:00pm Test (I was told this was invalid due to the time of the day, nevertheless, it shows a very sluggish response)
Baseline 3.4
30 Min 8.6
60 6.1
The endo did seem concerned and told me to get back on Cortisone, 15mg morning, 5mg noon, 5mg 4-5PM, immediately.
Notice that my baseline in the afternoon was lower than in the morning. This is because the body requires high amounts in the morning, and supposedly, pumps up a 2nd smaller shot in the afternoon. The interesting thing is that the number never doubles in 30 or 60min. Primary adrenal insufficiency will show high resting ACTH levels. You want to get an ACTH draw before the 0, 30, and 60 min Cortisol draws. If the ACTH is in the beginning, it says that the Adrenals are not responding to the ACTH telling them to put out more Cortisol. This is primary AI. Secondary is a result of the Pituitary putting out to little ACTH. If you had this, the initial ACTH value would be low, and the stimulation would pump the Cortisol levels double and above. The renin values are high, this suggests lack of aldosterone which regulates minerals in your blood. If I drink plain water, more than a glass, I will go to the bathroom every 1/2 hour for about 2 hrs. You also get mineral deficient, so it is important to take mineral replacment.
Which ever one you have, they are both dangerous. To show this, I will post my history and the stuff I went through. It was the most frustrating thing to go through for several years. People called me hypochondriac. Dr's said is was in my head, and I had to fight for answers all the way. Don't give up if you are not getting the attention you need.
By the way, many times when you have this condition, your blood sugars will be low. The only remedy I have found for this is to eat often, keep away from any sugars (fruits and all), stay away from foods that say "no sugar". This is a technical FDA term. Stay away from starchy vegetables and grains. Eat higher complex carbohydrates, proteins, and moderate vegetable fats. Sometimes this is what you need to do to feel that extra 15% better.
Hopefully, this and the next post will help you out. There is another great resource at:
http://www.addisonssupport.com/
just sign up for this forum and first post.
i am so shocked from what i am reading about the low cortisol. my endo says my cortisol is just about non-existent. MRI with contrast showed adenomas sitting on the adreanal gland and they seemed to be growing. he put me on 30mg corteff. 20mg when i get up and 10mg at night which i think i am messing up cause i am a night person and my sleep patterns are all messed up. had the stimulation test and various other blood test and its all normal except the cortisol. i have lost alot of weight and muscle and am shrinking. no hormones (age58) ,,,,,,,i know all the hormones are connected.
dont understand the test results which are:
cortisol am.....10:15 a.m. was 12.4
blood was tested every half hr.
last draw was at 12:15 p.m. and the level were 26.9
ACTH was 8 at 10:15 a.m.and then again at 10:45 it was 6.
cannot gain weight and feel like i am schrinking. i eat and eat and dont gain an ounce
i think it is hyperplasia.
really scared and hope i make it to the next endo appt where he will check the cortisol levels again. concerned about the growths
please help
i am so shocked from what i am reading about the low cortisol. my endo says my cortisol is just about non-existent. MRI with contrast showed adenomas sitting on the adreanal gland and they seemed to be growing. he put me on 30mg corteff. 20mg when i get up and 10mg at night which i think i am messing up cause i am a night person and my sleep patterns are all messed up. had the stimulation test and various other blood test and its all normal except the cortisol. i have lost alot of weight and muscle and am shrinking. no hormones (age58) ,,,,,,,i know all the hormones are connected.
dont understand the test results which are:
cortisol am.....10:15 a.m. was 12.4
blood was tested every half hr.
last draw was at 12:15 p.m. and the level were 26.9
ACTH was 8 at 10:15 a.m.and then again at 10:45 it was 6.
cannot gain weight and feel like i am schrinking. i eat and eat and dont gain an ounce
i think it is hyperplasia.
really scared and hope i make it to the next endo appt where he will check the cortisol levels again. concerned about the growths
please help
Are you ok? We have not heard from you and are concerned! Your cortisol numbers are near crisis or in-crisis. Please update us - our thoughts and prayers are with you. If only a doctor could get you on replacement therapy already before you wind up in the ICU needing IV hydrocortisone. We are waiting to hear back....
KonaRose, RN and fellow sufferer
KonaRose, RN and fellow sufferer
I SO agree with KonaRose, Oliviamarie....get treated now and not wating for an Addison Crisis to take hold on you. It is a horrifying experience you could die from. I wasn't aware how seriously insufficient my adrenal function was, until I had that first crisis that I literally hung on my dear life.
Fingers crossed that both of your MRI turns out okay...Super huggies,
Kit
Fingers crossed that both of your MRI turns out okay...Super huggies,
Kit
You may want to consider asking your physician about Chronic Fatigue Immune Dysfunction Syndrome.
Best,
~PlateletGal
Have an Answer?
You are reading content posted in the Adrenal Insufficiency Community
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
