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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!
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Avatar universal
Hey , this is not normal first of all if your cortisol is less then the range thats means either you have addison disease or something problem in your adrenal gland , you symptoms is quite similar to addison, consult your doctor as soon as possible even am facing this problem my all doctors are confuse my acth is high but cortisol is normal , i have headache, extreme featigue , nausea , darkning of skin, and acne whch is not going away . I suggest you please go for serum acth and cortisol morning and evening , morning cortisol need 13hrs fasting and exact at 8am it will detect
Helpful - 0
Avatar universal
I wish you had posted in your own thread this one is a mess!
Your symptoms sound like Cushing's.
Your ACTH looks like bad lab handling.
Rest of tests not helpful. You need an endocrinologist.
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Avatar universal
Female, 30, Chicago, IL, member since Nov 2015
I had an heart attack at 28 years old. 2 stents in me.i have coronary artery disease.hypothyroidism,high cholesterol,obstructive sleep apnea,hypertension,gastrointestinal problems,frequent uti,muscle pains,always weak and frequently fatigue.face always broken out.feet i s hard with a lot of dead skin.keep gaining weight,stomach is huge,stay bloated,lots of swelling.i use to have edema in both legs.swollen feet.it was fluid on my MRI by my vagina/stomach.i have an IUD(mirena) in me.pre-diabetic,very thirsty all the time.

Lab Results:
Cortisol LEVEL:< 1.0 ug/dl (Normal)
Date: Oct 13, 2015 08:45 a.m. CDT Learn more
ACTH
< 5 pg/mL (Low)
Date: Oct 13, 2015 08:45 a.m. CDT Reference Range:6 pg/mL - 58 pg/mL Learn more
WBC CLUMPS
MODERATE      (Normal)
Date: Sep 29, 2015 06:02 p.m. CDT Learn more
WBCS
176 /hpf (High)
Date: Sep 29, 2015 06:02 p.m. CDT Reference Range:0 /hpf - 5 /hpf Learn more
SP.GRAVITY
1.018      (Normal)
Date: Sep 29, 2015 06:02 p.m. CDT Reference Range:1.003 - 1.035 Learn more
UROBILINOGEN
NORMAL EU/dl (Normal)
Date: Sep 29, 2015 06:02 p.m. CDT Reference Range:0.1 EU/dl - 1 EU/dl Learn more
RBCS
31 /hpf (High)
Date: Sep 29, 2015 06:02 p.m. CDT Reference Range:0 /hpf - 2 /hpf Learn more
PROTEIN
TRACE mg/dl (Abnormal)
Date: Sep 29, 2015 06:02 p.m. CDT Reference Range:NEG Learn more
PH
6.0      (Normal)
Date: Sep 29, 2015 06:02 p.m. CDT Reference Range:5.0 - 8.0 Learn more
KETONES
NEGATIVE mg/dl (Normal)
Date: Sep 29, 2015 06:02 p.m. CDT Reference Range:NEG Learn more
GLUCOSE
NEGATIVE mg/dl (Normal)
Date: Sep 29, 2015 06:02 p.m. CDT Reference Range:NEG Learn more
COLOR
LIGHT YELLOW      (Normal)
Date: Sep 29, 2015 06:02 p.m. CDT Learn more
CLARITY
HAZY      (Normal)
Date: Sep 29, 2015 06:02 p.m. CDT Learn more
BLOOD
LARGE      (Abnormal)    
Date: Sep 29, 2015 06:02 p.m. CDT Reference Range:NEG Learn more
BILIRUBIN
NEGATIVE      (Normal)
Date: Sep 29, 2015 06:02 p.m. CDT Reference Range:NEG Learn more
SQ EPITH
1 /hpf (Normal)
Date: Sep 29, 2015 06:02 p.m. CDT Learn more
NITRITES
NEGATIVE      (Normal)
Date: Sep 29, 2015 06:02 p.m. CDT Reference Range:NEG Learn more
LEUK ESTERASE
LARGE      (Abnormal)    
Date: Sep 29, 2015 06:02 p.m. CDT Reference Range:NEG Learn more
BACT
MANY      (Abnormal)    
Date: Sep 29, 2015 06:02 p.m. CDT Reference Range:NONE Learn more
Urine Dipstick - Nitrite - POCT
Negative      (Normal)
Date: Jul 09, 2015 02:11 p.m. CDT Learn more
Urine Dipstick - Leukocytes - POCT
Moderate (++)      (Normal)
Date: Jul 09, 2015 02:11 p.m. CDT

Please help me: I feel like I'm 60 years old when I'm only 30 years old.i feel like I'm dying slowly, and them are only some of my health problems. [Less]
Helpful - 0
Avatar universal
Did you find out what's wrong with you. I have the same problems
Helpful - 0
Avatar universal
I really wish you had started a new thread... as your question has nothing to do with anything above...

That being said, you suppressed and your doctor will probably say you don't have Cushing's.

I failed every dexamethasone suppression test as did hundreds of my friends as we had Cushing's... so it can be a test of source, not exclusion... to an expert.
Helpful - 0
1 Comments
I'm having a very difficult time getting help :(
I dont look like I have cushings syndrome but when I did the dex test it didnt suppress to the low value...it was in the 200's
But I seem to display all signs of adrenal insufficiency. I have terrible flank pain, episodes of bone crushing fatigue, pulsating lower back pain and a burning pain in buttocks and thighs.
Avatar universal
Hello,  
I had to take a pill the night before my blood test.  So, what I found out is that the pill lowers the cortisol level because they were checking for Cushings Disease which would make the levels high.  Anyway, I was hoping that the cortisol level was the reason that I feel like crap most of the time but now that I've read about that pill and test, it might not be the case.  I just haven't found out if my level is a normal low level or if it should at least be a little higher even with that pill.

The pill was 1mg dexamethasone that I took the night before my a.m. blood test.

My cortisol level was 0.6.

Any clues?

Thanks!

Helpful - 0
1 Comments
You&#39;re not supposed to have ANY steroids in your system for 2 days, prior to being tested. I have adrenal failure. They simply no longer work. I hate the steroids, but they&#39;re keeping me alive. Get retested please.
9197017 tn?1429016816
Hi there,
I didn't see you create a new post, so I'll reply here.
I had high cholesterol for years, no idea why.
I addressed my low Vit D and my cholesterol dropped a lot.
I also have read that  low thyroid can contribute to high cholesterol.

I'll watch for you to create a separate thread / topic
Helpful - 0
Avatar universal
Hopefully she will post back but that was 2 years ago...

I hope you can get tests or a better endo. It would help to start a new thread so it is only about you.
Helpful - 0
Avatar universal
As I'm reading this, I'm wondering if it was ME that wrote it!  Darn endo said menopause (btw, I had period at the time) then told me my diet stunk (I eat about 98% natural organic food) and yet my cholesterol is still high, BP is high (it fluctuates from low to high). Nothing wrong with heart, lungs, liver etc. I had to have a crying fit in his office 2 weeks ago just to get him to "humor me" and test cortisol. This was AFTER he shrugged off the pituitary MRI I was asked to get by my nurse line at ins and the PTH test. He said "it's NOT your parathyroid" as he blew that one off...
So now I'M taking charge of my blood work!  Either he does the tests or I file a complaint...
J
Helpful - 0
Avatar universal
That is on the late side for a stimulation test IMHO. They are supposed to be at 8am, as is the baseline and regular testing.

Your test appears normal. You may be on the verge of failure - or it may be a renin/aldosterone issue if you have high potassium or low sodium?
Helpful - 0
Avatar universal
My cortisol was measured at 6.3 at 1057am. I subsequently had the ACTH test:

baseline = 6.7
30min = 17.8
60min = 21.4

My baseline reading for the ACTH test was done at 1036am (same time of day as the original test).

The endo checked my TSH and it was 0.92. And the Free T4 = 0.8….I wanted him to check the T3/T4 ratio but the endo refused since the TSH and T4 were within normal range…I still have low cortisol and don't know why.
Helpful - 0
Avatar universal
Piper - I am so glad you finally found a competent doctor who took you seriously and did not see one disorder only but knows you can have multiple things going on. 20mg is a hefty dose! Normal replacement is 5mg. BTW if you have empty sella, they actually cannot see what is going on there, the CSF is blocking the view. I have partial empty sella syndrome.

Slash... I am pretty sure you had an adenoma but it is super duper important to get copies of everything. 1mm change is actually not... much. MRI's have 3-5mm slices and tumors show up differently in all of them. Surgery is not even indicated in all tumors many are treated with meds so you have to know the start size (you did not indicate) and the type. 7.5 as a replacement is a smallish side replacement. You may need other hormones or florinef or something else. Other hormones can go after surgery. I slowly lost a couple others and heck, I had so many other things removed I replace almost everything (but one). If you take replacement cortef, you are AI.
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Avatar universal
Hi, there. About a year and a half ago, I had a migraine over my left eye that lasted 4 days. I went to my eye doctor who could not find anything wrong, but ordered an MRI of my brain. It showed that I had a pituitary adenoma. Blood testing revealed I had a cortisol level as low as 5.1. They deciddx to watch it for 6 months. In March of 2014, I started getting a weird pulsating, throbbing pressure between my eyes and extreme tirednessduring odd points of the day. I ended up in the ER, where they just gave me fluids, but could not identify the cause. I went to Stanford where they revealed that the adenoma had grown 1mm. We decidex surgery was best. I just had it Dec.3. The aftermath has been hell, to say the elast, but I'm typing this so it's not all bad. I was put on Cortef 40 mgs a ay, and have now weened down to 7.5mg. When it wa at 10 or higher of a dose, things felt ok. Now that I'm under 10 and being AFTER the surgery, that whole throbbing-pressure between the eyes is back. Now I wonder if it was the adenoma at all. Have you ever heard of this type of situation? I am being checked for adrenal insufficiency.
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Avatar universal
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.
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Avatar universal
If you get treated before testing, it sadly messes up the testing.

The doc should just test quickly.
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Avatar universal
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?
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Avatar universal
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.
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Avatar universal
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.
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1 Comments
My 8am fasting cortisol is 0.476. I note it is dangerously low. Any tips on how I can control the situation?
Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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... :(
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Avatar universal
I make no cortisol and have gained 50lbs with adrenal insifficiency and hypothyroidism.  There is no "one size fits all".
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