The Endocrinologist Appointment

Where we are doctoring currently (The University of MN) every appointment has been in the same hospital location.  So, yesterday's appointment was very near where her previous appointments were. . . including the dreaded biopsy appointment.  So needless to say, TT FREAKED out upon arrival.  The nurse even asked if she had had a recent procedure.  Umm. . . yes, she had.

The nice doctor then walked in.  She is actually a Fellow.  She asked a ton of questions.  Really good questions.  She said that in her opinion, Dermatology had already done the exact same tests that she would have done, and she made it seem like a lot of the big stuff can be ruled out by the bloodwork alone.  But, she said that doesn't really leave us with an answer.  She asked if we minded if she went and consulted with a higher up and of course I didn't mind.  TT and I played My Little Ponies and sang songs.  About 20 minutes later, this nice Fellow came in with another doctor.  Turns out they had been looking up cases for the past 20 minutes of past incidences.  And they could not find ONE case where a 1 year old was diagnosed with androgenetic alopecia.  Not ONE. 

So, we left the appointment with this nice Fellow wanting to do additional bloodwork.  She wanted to check TT's electrolyte levels, prolactin, another TSH, and a few others.  I mad the executive decision at that point to ask if she could just write up the lap request, and I could bring it down to the Mayo Clinic with me when I'm there next week.  Afterall, TT has been a bit traumatized as of late, and having her blood drawn would not help her to feel more positively about this place.  And because we are going to Mayo anyway, I figured why not just hold off and get all the needed bloodwork at one time.  The Fellow agreed and we were on our way. . . no where closer to knowing why my 1 year old lost a lot of her hair.

I was impressed with the Fellow we saw however.  She had read up on TT and really done her research before we showed up.  That means a lot to me.  And now I'm even more impressed with her.  I was sitting at work today and my phone rang.  I knew it was a UofM number, and figured it was a nurse or scheduler.  Nope.  It was the Fellow herself!  She told me she had been thinking a lot about TT and had done even more research in the past 24 hours, and TT's diagnosis at her age is troubling to her.  In all the research she had done in the past 24 hours, the youngest person she could find with a similar diagnosis was a 6 year old boy.  However, the Fellow said this boy had a huge family history of androgenetic alopecia.  We do not have this history in our family. . . at all.  T has a full head of hair, as does his dad, as does my dad, as do my brothers, etc, etc, etc.  The fellow said it occurred to her that she wants one more test done at Mayo.  She wants them to check her vitamin D levels to see if she has a resistance to that vitamin.  She said it's a long shot, but she really wants it checked.  DONE. 

She also told me that she is happy I'm going to Mayo and that no one in the medical field takes 2nd opinions as a bad thing.  She said that even though we are going to Mayo, she would love the results of all the bloodwork they do, because this is very interesting to her and she is intrigued. 

She then also said that she wanted to read the pathology report from TT's biopsy to me.  Basically, it noted that there is still a chance that it's something else, and perhaps a repeat biopsy would be needed to gain more tissue samples. 

Anyway, this nice Fellow and I spoke for over 10 minutes (that's forever for a doctor. .  trust me) and I got off the phone call feeling great about who we saw.  Being a fellow, she is looking to get hired somewhere after fellowship.  She is working hard on our case, and it's obvious, and it's so appreciated by this mama.  She is leaving no stone unturned, and between her, and going to Mayo on February 10th (a week from today) I'm feeling good that we are going to figure this out.  And perhaps this nice fellow will end up writing up a case study on TT because this is such a unique situation.

Has anyone ever seen Mystery Diagnosis?  I feel like I'm living it right now!  And although we still don't know what's going on with TT, I have an endocrinologist very uncomfortable with her diagnosis, and a doctor at Mayo, who I bet also shares that opinion.

Thanks for those who have been keeping TT in your thoughts and prayers.  It means the world to me and to my family.