Is she seeing a endocrinologist that knows pituitary and adrenal disorders - early puberty can be a sign of several disorders, not just CAH.
She is not scheduled to see one until the end of January.. There is only one Pedatric Endo in our area
Make sure you have copies of everything - films, labs, reports - and read up if you have not before (sounds like you are though!).
I would not hesitate to travel to another doctor - sometimes out of the box things require it. I had a pituitary and adrenal and thyroid thing, tried for years and finally went to the west coast.
I sent you a note that has a resource for you.
I just learned that I was born without left lobe of thyroid after years of constant fatigue and pain i was told by the same doctor for years that my thyroid was fine. I was stupid and never ask for the tests. They only ran TSH and has long as 7 years ago I was below normal .29 or bordeline and never had a T3 or T4done. Had several images of neck due to DDD but never mentioned my thyroid. Was told last CT was normal so went to another doctor and had the CT pulled. Says apparent post ressection rt lobe changes. Trying to get hold of radiologist had he meant by changes. Finally found one ct at a hospital and am trying to get it from 5 years ago. When I got my chart from doctor all reports were pulled My neck has been swelling all month, triangle lymph nodes around jugular and enlarged under jaw. Bilateral swelling of neck and shoulders 5 months and no doctor, been to 5 will tell me whats going on the swelling on the left is in my throat and over a vein.Sore throat all the tome and swelling of sternomastoid muscle and jaw been on antibiotics for 4 months.Because a recent new doctor found out a recent test I asked for showed low T4 no one knows what to do and stuck me on Synthroid and says hes done, great internalist. Synthroid making me feel horrible and now I think I have Sjorners my eyes are so dry and mouth that I keep drinking water all day but does not help. Think Its an endrocone problem but seems the doctors around here protect each other from misdiagnosis the swelling started after a epidural in neck even though I came for back trigger shots. IM feel like Im dying and in so much pain from severe spinal pain and the swelling of shulders. could you reccomend the doctor or have any suggestion?
Did they ever run antibodies, or the frees - free T3 or T4?
Sounds like you and your daughter need to travel! Have you tried a rheumy to get testing? Some of them may be a bit smarter since it sounds like you are surrounded by endummies.
Resection = removal and er, you did not have it out - so they are saying you had it removed and it looks different.
Have you seen an ENT?
Please tell me what happen with your daughter when she was diagnosed with metabolic acidosis. My neice is 5 yrs old and diagnosed with the same thing. How long did it take for her to recover. Please i am really worried. Can u tell me how they diagnosed her. Did she do therapy? Please help me. Email me at pal_gyal***@****