adrenal insufficiency

[walvee]

My daughter received Lupron Shots for over 3 yrs as a child. She is now 21 and has been very sick for over 2 yrs. She was just diagnosed with Adrenal Insufficiency after going to 3 emergency rooms, urgent care many times, a few PCP doctors, a few endocrinologists in 2 different states during these last 2 yrs. She is taking cortisol pills and still can not function as a normal human being. She is in constant pain, losing weight all the time even tho she is eating healthy, and so fatigued that she sleeps over 18 hrs a day, and after taking the cortisol pills for over a month still her level is only .4. Is there a specialist in this field, someone more than an endocrinologist in PA that would be able to help her?

[drumth1]

It's important that you get her to a good endocrinologist.  Contact CARES Foundation for help with a referral.

[rumpled]

(by Walvee) Sorry. I meant to say Hydrocortizone pills. She was misdiagnosed with thyroid problems and put on thyroid medication by the 1st doctor she saw. The 2nd doctor took her off the medication. It was almost 2 yrs after seeing the 1st doctor that one of the next set of doctors would even think to test her cortisol levels. Her am level was non measurable. After taking the medications for a few weeks it was .1

[rumpled]

I would guess that your daughter had precocious puberty and the lupron shots were a mask, not a cure... shame. She needs a neuro-endocrinologist and a good one at that. So you need to find a pituitary center.

The cortisol - unless taken properly and she may also need florinef - is she getting florinef? Is she taking salt tablets? How is her sodium, potassium, renin and aldosterone? What about her other hormones? Get copies of everything and move her over to another endo with smarts.

There are links in the health pages the very lowest on the right - that may help you! Keep us posted!