Very very very low cortisol, less than 1 in the morning, what does this mean?

[oliviamarie12345]

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!

[Slash72]

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.

[PiperL4]

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.

[rumpled]

If you get treated before testing, it sadly messes up the testing.

The doc should just test quickly.

[mctutums]

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?

[momma1505]

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.

[rumpled]

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.

[ambhanda]

My 8am fasting cortisol is 0.476. I note it is dangerously low. Any tips on how I can control the situation?