Hi KCDC,
I read with interest your situation with your fatigue and that the endocrinologist suggested you may have unspecified adrenal insufficiency even though you have the symptoms of fatigue and your cortisol reading is at the lower end of normal. There are many schools of thought and one source of information from "The Handbook of Hormone Therapy by Thierry Hogue ( I don't have the right spelling) would suggest that you have have a probable adrenal insufficency. The book will recommend that you start on a low dose of Prednisolone 5mg daily for 10 days and see if it will improve your symptoms. If it does, then you may have a confirmation to your diagnosis. A note of caution. It is always important to get a doctor to supervise you hormone therapy. I suggest you looking for a doctor who is interested in anti-aging hormone therapy.
All the best
GWHYS
Good luck. It can take a lot of time to get results and testing is frustrating.
Sorry not answering fast these days, lots of tests myself pre-op bilateral breast cancer.
Including the endocrine system, cortisol . Crazy how the body works
thanks for your reply again! It doesn't seem like to many people respond on here so it was nice to know I'm not alone - thank you! I got some more news since my last post. My neuro explained a connection between the results I have so far and my neuro disorder. It seems the neuro disorder can affect any system in my body. I'll be signing off the site. I wish you the best and take care
You stimmed well. So I don't know why she considered you to be AI at all...
If you were secondary the ACTH would be low... But most often it is low due to lad handling instead of the patient.
The low cortisol would be the same if it was primary or secondary (I have both) and usually a pituitary endo will not take you unless you have testing or a scan that shows you have a either a pituitary tumor or a complex endocrine issue.
I'm so happy for your reply! I was afraid I'd have nobody to talk to. I really need someone to talk to. I wasn't clear in explaining my sleeping - sorry. For the past year I've been going to bed at a normal time, around 10-11 pm and waking at 8-9 am. I feel I sleep but wake up feeling so fatigued. About a year or two ago I was more of a night owl bc I used to get energy in afternoon and evening. Now it doesn't come at all. I am bed bound all day. I have a long list of symptoms but wasn't sure if I should list all of them....please tell me if I should tell more symptoms.
So, I had a bunch of blood tests. Thyroid is ok and infection has been ruled out. My first blood test said cortisol was 5 (quest range of 4-22 ), ACTH 9 (quest range 6-50). I thought this was low but dr said since in range so I'm fine! My ACTH stim test cortisol was 8 (thought this was on low end). I seemed to respond good to the ACTH they gave me bc 30 min cortisol was 26.8 and 60 minute was 31.9. I felt better after the test lasting a day. I should also note that in 2011 my am cortisol was 15.9....now it's 5 and 8. I then felt worse so I returned to endocrinologist. She said I didn't have adrenal insufficiency bc my adrenals were fine. Can you help me w questions:
1. I feel she didn't take me seriously. She didn't give give me any advice or reasons for my symptoms. However, the paper she sent me home with said my diagnosis was "unspecified adrenal insufficiency"?! She said no further appt needed. Do you know what this means?
2. Is it possible to have secondary or tierciery insufficiency? She only discussed and was concerned w primary. Could my lower end ACTH indicate this? I understand having one value....but why not investigate further when coupled w my symptoms and lower cortisol? What do you guys think?
3. I've read many other posts here with similar symptoms and or numbers. Do you think another endocrinologist opinion would be helpful? Would I be better seeing someone who deals w pituitary and hypothalmus too since this dr was only concerned w adrenals?
Thank you for replying and for any additional help from the group!
Hi kcdc
Yes if that is quests references ranges it is in the low normal range. Many things can cause fatigue you need to have a full work-up including thyroid panel as well as checking for simple things like a urinary tract infection. Although would be rare to have so long without severe symptoms. Also you said you have become a night owl. So you need to make sure you get back to a normal sleep schedule prior to the blood testing or a 7am cortisol wouldn't be accurate if you're going to bed late or after midnight. Also with your neurological disorder it could be medication related. Are you on any new Meds or pain medication?