Monday, April 2, 2012

I just flipped through my binder and saw that after my appt with endo #1, I wrote her an email sharing some articles on testing for Cushings and asking for more labs and a pituitary MRI.  I never heard back from her. 

My first ‘cold’ midnights were within the ‘suggestive’ range for Cushings syndrome, although my 24 hr UFC were normal my 17 OCHS were high indicating states of hypercortisolism, but not the constant state which would bring in the high 24 hr numbers.  I had one 8 a.m./4 p.m. day which showed a lower number in the morning and a higher number in the afternoon.  This is ‘diurnal flipping’, where one’s cortisol production is opposite of the natural healthy rhythm.  I shared my testing with my new Cushie family on the message boards and I will always remember the reply of “Welcome to Cushings” after my diurnal flip was proven.  Not a club anyone wants to join….but clearly God was giving me the direction… random testing I was getting results suggesting Cushings and those who went before me and had the knowledge and experience encouraged me to keep going…….

I decided to try a different local endocrinologist; there are only 2 in my small town.  I prepared myself with my questions and new lab results and made the appointment.  I really wanted this to work out.  I was so disappointed when almost immediately I felt ‘scolded’ for seeking a second opinion.  He actually questioned why I wanted a second opinion as he knew the first endo I saw and she was good.  And that they both had attended a conference on Cushings at NIH and so therefore they knew all to know on the subject,  in his humble opinion.  He recognized that I did indeed have a couple abnormally high cortisols, but since I also had normal results it was his determination that the likelihood of Cushings was ‘quite low’.  He continued with “…it could be very early stages of Cushing’s and if that is the case, this can often be difficult to diagnose.  This is generally not a clinical emergency and can often take time to evaluate and actually determine if there is Cushing’s.  We will plan on re-evaluating many of the testing she aleady done and go from there”

Now call me crazy but re-evaluating what’s already been evaluated and dismissed by you?  not a chance.  I guess I should give him credit for recognizing the possibility of Cushing’s as he dictated in my consultation letter I just quoted, but in that patient room he told me since I didn’t have purple stretch marks or a ‘beer belly’ it was very unlikely I had Cushings. I asked him flat out “how much weight do I have to gain for you to consider this?”  He assured me that he didn’t want me to gain any more weight, but he would not order a pituitary MRI for me at this point.  Even though I had abnormal cortisol labs, I also had normals.  I felt like the normals trumped over the abnormals and that thinking seemed backward to me.     After I left his office with 3 more saliva tests to complete.  I wrote him a short letter and included pictures of my ‘beer belly’ taken later that very day, as it came like clockwork every evening.

 This endo did offer to send me to Mayo, but I had done my homework and knew that Mayo is not helpful for cyclical Cushings…the type of Cushings I believed I had with fluctuations in cortisol levels.  I decided to do those salivas and when they resulted I got a call from his nurse wondering why I did them since I had cancelled my follow-up in 3 months.  I explained that I wasn’t going to wait, to get sicker another 3 months, and I was moving on.  She told me that endo #2 wanted me to call and let them know if I got a diagnosis.  I never did that.  I think I’ll send him a letter in hopes that he won’t make those quick judgments the next time he has a patient like me.

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