Dear Lord, why have they let you suffer for so long? I, too, have gone through something similar, and I am a registered nurse. I have been so sick, fatigued, cloudy-thinking, waves of heat and pins and needles, too tired to walk across my house. My cortisol is between 3 and 4 and last week I was started on Cortef. I have adrenal insufficiency big time symptoms. Since the adrenal glands are responsible for over 100 hormones, I don't have hardly any and almost went into a type of Addison's crisis with cardiac symptoms. Even now my blood pressure goes way up, then the bottom falls out and it plummets to like below 80/50 and I feel like I am going to lapse into unconsciousness. I take a Cortef and 30 minutes later I am back among the living again. So this is not a disorder you want to take lightly. I am having an MRI of the pituitary tomorrow morning and if that is negative, next is a scan of the adrenal/kidney areas, looking for a mass or something. Please explain to your doctor how serious you are feeling, ok? Do not wait until you are in a crisis.
You may want to consider asking your physician about Chronic Fatigue Immune Dysfunction Syndrome.
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,
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
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
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:
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:
Resting ACTH - 52
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)
30 Min 8.6
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:
This may help you understand symptoms that may occur:
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.
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!
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???
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.
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
Typically, low cortisol people are thin. High cortisol people are heavy. It can cycle like crazy. Cortisol also has to be tested at certain times. It cannot be a random test. It normally fluctuates.
There can also be an issue with renin and aldosterone.
I make no cortisol and have gained 50lbs with adrenal insifficiency and hypothyroidism. There is no "one size fits all".
Agree! I have met thin people with high cortisol. I had many symptoms with my high cortisol that were in the lower percentile - e.g. no blood sugar, cholesterol or blood pressure issues. I did not gain for years. So I try to say *typical* instead of *always*... there are norms but people certainly do not fit into the boxes. I know I did not.
I don't have as much experience with un-diagnosed low cortisol people as I have only met post-diagnosed people for the most part. I know post-diagnosis, weight is an issue with replacements. But thyroid issues can play a part if you have them for sure. However oddly doctors think that is not a factor... :(
Hi. I am having symptoms of major mood swing, I am exhausted all the time, my neck hurts and hard to keep head up when exhausted. I have diarrhea after I eat anything. I am losing weight. I have muscle aches. My white and red cells are high, I have anemia, I sweat really bad, I get headaches and joints hurt. They said my cortisol is low. I have hallucinations. And my memory is bad. I am just concerned. I gotta get blood work done.
I went to the doctor, I felt something was going on with my body. I thought it might be my thyroid. He ordered blood test, it came back normal. I told him it might be a false reading since I was on HRT, I had a complete histroectomy in 2000. I have been gaining weight and nothing I do diet, exercise nothing helps, I noticed dark skin pigmets on my face, I was always so tired. I also have Hidradenitis suppurativa and i get infections easy. I get cronic UTI's . I have been having dizzy spells latley. Woke in the middle of the night with severe stomach pain with no know reason. My doctor sent me for a radioactive scan of my thyroid it came back normal. My doctor sent me to an endo doc and he said he was baffled and he didn't know what was wrong, he said the only thing he could thing of was to do a cortisol test but he didn't think it would show anything. I agreed to the test. My morning level came back at .7% very very low. I didn't like the doctor i was sent to so there finding me another doctor. What do you guys think is going on, i am scared.
It is good you are going to another doctor. One test is not diagnostic - so you need more. Sodium testing would also help.
There are lots of tests you need to have a good doctor to cover them all.
Got my results from yesterday and my cortisol fasting am level was 0.54, prolactin and tsh levels elevated with MRI showing 4mm pituitary adenoma. Endocrinologist still running more tests. I'm praying for you. No treatment given to me yet. Praying all works out for the best.
Sadly, you did not post in your own thread as it is confusing to mix stories.
Every lab differs so without a range it is hard to know if your cortisol was low - it appears low? It sounds like the endo - I hope a neuro-endo - is running more testing to determine the type of lesion so it can be treated.
Two months ago I was told I had nodule on my thyroid, and some of my thyroid test came back elevated, so the doctors were thinking hyperthyroidism. Then about a month ago I was driving and had a major panic attack where my temp was high and my whole body spased up, I was rushed to the ER and they said it was due to the hyperthyroidism. Every since I've experienced extreme fatigue, headaches, dizziness, panic attacks, jittery feeling, and ton more unexplained symptoms. I finally got into a endocrinologist and they tested my thyroid again, which is now normal, metanephrines and cortisol. Well my cortisol level is 1.0. I am still waiting to hear back from my endo to see what the next steps are. I'm a medical assistant so course I googled all about low cortisol, and I'm a little scared and confused about it. I'm also a mother of three and my symptoms have interfered with my family and I just want to be back to my normal self. I found this site and joined in the hope of finding some support.
Going for further cortisol testing tomorrow. Over the last couple of years I have got more and more fatigued. Now I have profound fatigue, a funny pins and needles sensation in my legs from time to time - nausea every time I eat, I'm off my food, I've dropped 3kgs in a month - brain fog that comes and goes. When I feel at my worst, I think I'm fainting... It's a weird feeling, like slowly fading out.
I had a test done which showed my cortisol below low normal but I didn't get to see the result. He decided to do the test tomorrow. Then scans if required.
Can I ask for treatment prior to dx? I think I feel ok until I stand up and move around. I've also had bright white flashes peripherally. Any thought or advice? Thank you and anyone know what happened to the lady of the original post?
If you get treated before testing, it sadly messes up the testing.
The doc should just test quickly.
I had my cortasal tested at eight in the morning last week and it was .9 which is low. I had one severe adrenal crises and they took me to the er where the doctor said oh he just overdosed on his pain meds as I have Lou Gehrig's also. But I went into a deep sleep for six hours and they finally did blood work and my cortasal was nil. They gave me an IV with some steroid and within thirty minuts was back to normal. But now this problem is back and the MRI of my pituitary gland showed an empty cella or as the doctor told me my pituitary gland was shrinking. Any ideas of how a doctor should handle that type of problem as I think what a doctor did messed me up. He put me on prednazone 20 mg for two years. Then another doctor said that was nuts and began a slow taper. When I got to five mg all heck broke loose and I had two adrenal crises which only stopped when I took 20 mg of prednazone again.having Lou Gehrig's is bad enough but to ad this problem is almost to much. When it happens I am totally unable to function and takes everything I have to get some pills down.