u/SophiaHJ_22

So today was the day… I’d been mentally weighing up whether it was worth taking my suspicions to the GP ( always a different Doc, you never end up seeing the same one twice ) but I did. The appointment went 50 / 50 - she didn’t seem to be entirely aware of ARFID, so I explained it as coming under the category of an >!eating disorder… despite not being in the realms of anorexia or Bulimia!<. I tried to explain that my concerns come from a complex medical history, including previous history of being tube-fed, generally low appetite and an inability to gain further weight ( I fluctuate around 125 lb ).

Hopefully, she’s going to refer me to a dietitian - I specified that I would ideally like to be seen by one aware of ARFID - but towards the end, she asked if I’d like to be referred to an eating disorder clinic. I said no, because I don’t consider it a conventional ED.

Hi all…

Please allow me some understanding…. It’s been a while since I’ve been on here, or Reddit, more generally.

For context, I’m historically, medically complex, with a history containing a serious congenital condition; undescended ‘knockers’, bilaterally; cleft palate ( for which I was meant to undergo a pharyngoplasty - aborted ); hypotonia; Hypergonadtrophic Hypogonadtrophism; bilateral sensorineural hearing loss ( mild-moderate ); late-diagnosed Autism - also suspect inattentive ADHD, refused assessment. I’m also Transgender+, and had my puberty medically induced until the age of 16.

I bit the bullet and got a referral back to Endo, whom I saw about a year-ago. Unfortunately the appointment did not go well. Firstly, the appointment was running late, and I ended up seeing a clinician different to the one named on the appointment letter. More generally, the appointment felt rushed, and like i was fobbed off - the clinician went as far as to say I no longer, in his opinion, had HH ( but I know removing a diagnosis can’t be easy easy as that…? ) and suggested the HH was actually a consequence of the treatment I received for the Congenital condition… the link is a possibility, but… uncertain?

Further, when I mentioned I had been referred to my nearest GIC, the whole atmosphere - and appointment direction - appeared to change, despite me making clear my suspicions about having either Kallmann’s or Klinefelter’s, were entirely separate to my identity. ‘Trans-Broken-Arm Syndrome’ suddenly became real….

I tried speaking to a Doc at my local GP practice, but despite coming away somewhat reassured, suspicions still linger…? Honestly, my entire experience has been pretty negative, to the point whether I’m even welcome in communities like this, or r/Intersex , but if anyone ran into similar issues( ? ), what can I do next? Is it even worth requesting genetic testing…?