Unfortunately I feel I'm unable to give you proper advice... Because I'm dealing with the same very issues you describe...
I too hate doctors. Seems like they prefer to ignore IS people like we don't even exist... After studying the subject for 1 year I'm quite sure I have some sort of 45,x or 46,xx mosaicism. Probably your case as well... I'll keep trying until I get all proper tests done, including karyotype. Suggest you keep trying as well...
Good luck!