Discussions By Condition: I cannot get a diagnosis.

Rare Endocrine Disorders?

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: bennycook
  • July 22, 2009
  • 09:40 PM

Hello, there. I'm looking for a clinic or physician that specialises is diagnosis (testing for congenital disorders of the Endocrine system) and if possible treating rare Endocrine/Metabolic disorders. Especially those to do with congenital abnormalities.
I have been diagnosed with Hypopituitarism (No tumor or equivalent), Hypogonadism and have had 'paradoxical' responses to treatments thus far.
Also have elevated reverse T3 and elevated Interleukin-2 levels and elevated 17-Hydroxy progesterone levels possibly indictaing CAH of some bizzare type, or may just be indicator of other congenital defetcs, who can say at this stage.
Rapidly dominishing Cortisol levels when given Glucocorticoids to sub readbale clinical levels within 5 days of low dose hydrocortisone therapy, and an abnormal (insufficient and very slow) Insulin response outcome from Insulin response test which lead to a hypoglycemic diagnosis/Hypopituitarism.
Previous finding of highly elevated DHEA levels approximately 3-4 years earlier which was corrected using HCG (dexamethosone failed). Glucocorticoids make me very ill, with severe chills and swollen throat/glands on left side kicking in within a matter of hours and rapidly getting sicker and sicker as treatment continues. Noticed the same respone when given anti-depressants especially the SSRI and SNRI types. CHILLS!
Any questions welcome and any ideas or suggestions even more welcome. If you know of anyone that might be able to advise/screen or assist on a professional level, I'd be most grateful.

Thanks, Ben

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