Thalasemmia Beta with adrnel insufficeny

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Offline acv1970

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Thalasemmia Beta with adrnel insufficeny
« on: September 18, 2014, 12:33:33 AM »
Since my original diagnosis in 2011 I have develop a rare form of lupus that affects the skin.  Tumid Lupus and had believed the symptoms I were having (Nausea, muscle weakness, fatigue) but recently I was diagnosed with adrneal insufficeny.  Though my glands responded to the ACTH stimulation testing and of course felt super afterwards; my own research indicates that this is something that is seen in Intermedia adults.   I was told I was a minor, but do to the rarity of my form I am now thinking they had no clue......    I inhearted a mutation from each of my parents and require support during times such as pregnancy....  i would be intermedia.   Has anyone else had experince with Endocroncial issues or late on set diabetes type 1 that is consider a rare form of autoimmune induced.   Every test value, plus diagnosis I have all are pointing to these two things.   Any one else have similar experiences that I can share with the new Internal Med doc I see on Friday (9/19/2014)  I was ER'd on 8/8 and help overnight due to the AI at one of the top 10  medical university centers in the USA and they never brought up my Thal.....  I discovered all the info on my own.   (Rare means they don;t know anything about what you have and it is a wait and see)  It would be appreciated in educating my doctors

 

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