Cushing's Info

Hello and Good Morning!!  First i want to say that this is a great website..very informative and hopefully I can find some help here.  I was diagnosed with autoimmune adrenal insuffiency back in 2009 and put on 30mg of Cortef for the rest of my life. He said my cortisol levels were below normal of -1.    Then in spring of 2010 this endocrinologist raised it to 60 mg cause i was having dizzy spells.  I got suspious of this high dosage and told my primary dr and he sent me to an university hosp. and another endo. The new endo said that the cortiso levels were normal and that the first dr was wrong.  Now since 2010 the new dr has been trying to wean me off the steroids with no success.  I am now on only 15 mg a day.  Here are my lab results from the first dr.  Hopefully someone here can tell me if they think they are normal or not.

This is a acth stim test::  july 2009

Cortisol am 10:45=  11.6

cortisol am  11:15=  25.0

cortisol am   11:45= 9.8

cortisol am   12:15= 26.9

acth 10:15    8

acth  10:45  6

acth  11:15  35

acth  11:45  28

hgh  10:15  15.6

hgh  10:45   4.9

hgh  11;15  3.2

hgh  11;45  2.3

hgh  12;15  4.9

somatomedin c was 117.

fsh 99.6

tsh 1.34

t4 free 1.10

As I said the second dr has been trying to wean me off the steroids.  i did have a 3.9 andenoma on the right adrenal gland removed in Sept 2010 and waiting for the left adrenal gland to kick in which it has not according to the last acth test done last December 2011 with a cortisol level of .5 which is suboptimal i was told.  This dr. also said if I went off the steroids now I would die!!!!!!!!!!!!!!!!!!!.   I dont know who to beleive.

I am extremely skinny and bony and eat around 3000 to 4000 calories a day.  I was referred to Mary O a year ago thru Power-Surge forums and wrote her and never heard a reply.  I lost 30 pounds without trying and went froma size 12 to a size 4,  bmi is 15.  tried to sue the first dr but was told it was over the statues of limitations and tried for an extension of this but no lawyer will touch it cause they said the judges would throw it out of court.  My arms and legs are like twigs and bones are sticking out...trying to hang on.  Please someone help.  Thank you

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Leiana was interviewed on March 21, 2012. Archives are available at http://www.blogtalkradio.com/CushingsHelp and iTunes podcasts