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Addison's Disease Message Board

Addison's Disease Board Index

Hi. I am a 40-year-old female and have been previously diagnosed with hypopituitarism but there isn't a tumor involved and so it is presumed to be due to lymphocytic hypophysitis. I have been on thyroid meds for 20 years for hypothyroidism, diagnosed with hyperprolactinemia about 12 years ago, for awhile my LH/FSH were suppressed and I was deficient in all sex hormones and Growth Hormone and was on replacement until about 15 months ago and during that time had also been on and off bromocriptine for the high prolactin. My estradiol/progesterone and LH/FSH have returned to normal since being off the replacement. My prolactin level had been normal until recently and in the last year has been increasing with a jump to 149 last month.
Now to the adrenal DHEA-S was 33 ug/dl (range 35-430) last October. My Pregnenolone was 10 (ref 10-230 ng/dL) and my testosterone basically stays low. Last Month's levels:
Cortisol 10.2 mcg/dL at 2 p.m. ref: 8 a.m. 8-27 mcg/dL
4 p.m. 2-18
ACTH <5 pg/mL at 2 p.m. ref: 5-46 pg/mL
IGF-1 117 ng/mL ref: 90-360 (too extreme in my opinion) my endo says my IGF-1 is "normal", I think it's way too low

The nonexistent ACTH prompted my endo to order a cortrosyn stim test and I just got my results: (done 2 weeks ago at 11:10 a.m.)
Cortisol baseline (ug/dL): 19.8 ref: 4 - 27
Cortisol 60 minutes (ug/dL): 47.3
I was thinking that he should have also checked the aldosterone response but he only wanted to check the cortisol. My problem is this: I have been gaining about a pound a week since May (without changing my eating habits), have continued to be fatigued, get winded doing tasks that used to be no big deal, run to the bathroom frequently at night, and have had abdominal distention from the ribcage down and the entire right side. All weight gain/fat deposits have been in my abdomen, hips, and thighs. I have thin lower arms and hands, face is much rounder and I have the "hump" on the back of my neck, and have had increased body hair growth all over. The endo didn't seem too concerned with all this and basically ignored the reference to the hump, hair growth and central weight gain. These all seem to point to Cushing's but yet my labs don't. Chris, any ideas? Does it seem feasible that it could be Cushing's yet due to the pituitary problem, my cortisol levels don't indicate it? I've been thru TOO MANY endos to count and it took me 5 years between this one and when I quit the one prior to go to one. My primary doesn't want to "step on any toes" as far as doing any further endo tests. Any suggestions would really be helpful. I haven't been able to work for the past 2-1/2 years due to the endo problems and fibromyalgia, depression. I just want to feel normal again! Help from anyone is appreciated! Sorry for the long post and thanks for listening.

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