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Posted by Jill on February 21, 2000 at 17:04:34:

In Reply to: Re: Addison's Diease ?? posted by gwen woods on February 05, 2000 at 17:11:27:

: : I have been very tired lately and and I'm too weak to get out of bed I don't enjoy my dance classes anymore and I've missed 4 days of school because I was too tried to get out of bed. I also have swollen lympnodes and muscular aches. What is this ?? Can you help.

: Do you have any of the following:
: unrefreshing sleep
: feeling of fatigue no matter the time of day
: early morning nausea or vomitting
: sleep constantly

: If so then I may be able to point you in the right direction. I have all of the above except muscel aches/lymp node swelling. I have been to 33 doctors and 45 specialists of the past 11 years for this unexplained disease and no one has been able to help me. I took it upon myself to get medically educated and found literature on hormonal diseases and read further. I was suicidal and despirate to find an answer so I forged a lab slip and ordered the following:
: 8 am Quantitative Cortisol
: ACTH (AdrenoCorticoTropin Hormone)
: Adrenal Antibodies
: Aldosterone Level
: 24 hour Urine Cortisol Collection
: Chem 12
: CBC with Sed Rate

: I alone was able to diagnose me as having low cortisol levels both plasma and 24 hour urinary. I guess since I am so young and look healthy the doctors never thought that could be the cause--isn't the answer always in the last place you look? I took these results to an endocrinologist I know and he ordered MRI of my pituitary, Prolactin, Estrogen(all normal), and repeated the ACTH (normal), Cortisol (low). I am fighting him to put me on replacement cortisol therapy at the present time. He tells me that it will make me sleep soundly and have lots more energy during the day but the side effects (lower immuoresponse and loss of natural production of Cortisol) for him out weigh the benefit. I told him to go without sleep for 5 days straight and lets see how quickly the side effects still out weigh the benefits. I think I will see still yet another endocrinologist who sees things my way. Also BEWARE of internists--I went to one and swear I will never go back again. She told me I had reflux that was keeping me from a sound sleep and I was too young to have hormonal problems. I guess she doesn't realize I could DIE if I have an addisons crisis. As you can tell I have NO faith in doctors.
: Write back on the message board, I am eager to talk somemore.
: Gwen Woods
: MA, MLT, RN, Phlebotomist, EMT-A

I was diagnosed 3 yrs ago following various tests! My doctor @ the time said I was depressed! On 1 visit, my mom had to drive me as i was far too weak and my doc said that i was anorexic - mom blew her top and said that she had never heard of an anorexic who cried because she couldn't eat her yorkshire pud! I was taken into hospital one morning after my blood pressure could not be read off the electronic bp meters! It was only then we were given a possibility that it was Addison's (it's typical- you almost have to die before you're taken seriously. Do you find that you sweat more than you used to?!

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