Hi all.  In 2016 I had breast explant surgery and after the surgery my world just got worse and worse felt like I was going to die. I continued to get worse and worse. I had three stim tests done first one lab test clearly didn't pass was put on HC steroid was on it for over a year then was taken back off of it by new endocrine in November after she did stim test.  Other two before that I was told I passed oddly enough. However my cortisol was low etc. 

These were my results from October stim test (last one)  Cortisol baseline was 6.7, 30 minutes later 18.3 and 60 minutes later 20.2, and ACTH was 19.

Since getting off the steroids back from October my aldosterone has remained elevated and I no longer get super dehydrated even being off steriods where I did before but now I have the opposite problem I can hardly drink 1 liter of water a day if I drink that my urine osmoality goes high over 900 to around 1,092 most of the time and I feel awful.  I feel bloated and fill like I am filling with fluid. abdomen distended etc.  It also is lowering my RBC, hemoglobin, and hematocrit down to below normal levels.  Also when I drink not even 1 bottle of water my urine gets very concentrated dark yellow and sometimes orange.  The more water I drink the darker my urine. For 2.5 years I had to do IV hydration and drink tons of bottles of water and my urine always went lighter not darker?  My liver enzymes keep elevating now as well since.

Anyhow recently I decided to just check on my cortisol and ACTH random not stim test so probably not as good and my Cortisol is 13.8 which is fine I believe but my ACTH is only 11.8.  ACTH on the stim test was 19. Now I don't know if you can compare a stim test really to random so this may be where I am going wrong.

Anyhow I had several aldosterone renin tests done right after getting off steroid and waitiing on most recent one about a week ago.  Two o them showed the ratio at first to be elevated aldosterone and low renin, then the next two were elevated aldosterone and not low renin so my endocrine said that dosen't look like primary hyperaldosteronism.  She has prescribed me Spironalactalone very small dosge 25mg however due to my constant elevated aldosterone which is causing me mild hypertension.  I feel it definitley in the morning and she said this is because this is when your aldosterone is the highest.  I am waiting for it to be compounded. 

I also have had way worse hypoglycemia then I ever had even before getting on the HC steroid.  My reactive hypoglycemia is extremely bad during my higher estrogen phase of my cycle. It was so bad I had to eat every hour which is bad for my digestive system as I also have Chron's disease.

I also did back in January have my primary care MD and naturopath run a saliva adrenal cortess stress hormone test and it showed my DHEA low at 61 ) 71-640 was the range. and my DHEA/Cortisol ratio was low. From what I read on the test it stated a decreased ratio generally reflects a catabolic state.  It is associated with cortisol elevations and HPA axis imbalances.  Causes should be addressed.  So at that time it looked like I had too much cortisol and my other NMD also said it looked like I had too high of cortisol.

Fast forward to April and my cortisol is 13.8 and ACTH only 11.8. Isn't a 7.2 drop in ACTH in 4 months kind of a concern? What could this indicate?  I have had several specialists think I have a tumor somewhere. I can't do IV contrast with iodine or gadolinium so it's not very telling even though I had an mri of my abdomen recently without contrast that indicated nothing. I also had a petscan with glucose and I had a couple mild uptakes but Mayo said it didn't mean anything. 

I am very low in many amino acids and I found out that three of them cause chronic hypoglycemia. Then I read somewhere that ACTH has to do with amino acids and fatty acids so wondering if my deficiency in ACTH is simply due to amino acid deficiencies?  

In the meantime I am feeling worse and worse again and actually feel more like I have adrenal insufficiency low levels than high other than the hypertension I feel early in the morning.  Towards the end of when I was weaning off the HC steroids though I was having issues even tolerating low doses of the steroid and it seems now with the results I had right after that,may have been because I had too high of cortisol at that point.

A few people have told me to look at pituitary but I went to a pituitary specialist about 6 months ago and before I went to the new endocrine both under the same umbrella and he right away at that time before I was put on steroids told me none of my symptoms pointed to pituitary at all.. Could he have been wrong???  Super confused.... Sick of feeling so awful for over 2 years now and not being able to function.  Worried about my heart now as it seems to be skipping beats a lot now too?  Don't know if related or not.

Please help.....  By the way I was told I don't have Addison's but that I could get it at any point due to my autoimmune issues and my NorthEast European or NorthWest European ethnicity.

Thanks so much!

Kharr40