Scary, with my first endo my baby was also constantly having high potassium and based on that he concluded that he is a salt waster.  It was Dr New who pointed out to us much later, when she was trying to get him off treatment, that since she believes that it was blood taken from the heel, it doesn’t tell anything.  His primary doctor did those first few blood works.  I asked him about it and he admitted having them likely done on the heel.

I was always wondering why on the labs from that time, his sodium, although on the very low end, was never low enough to come to a definite salt wasting diagnosis.  On the other hand, during the period since he was off treatment, the sodium was constantly coming back extremely low.  Now that you mention that when your baby’s labs became hemodized both the potassium and the sodium where higher than normal, I’m thinking that maybe my son’s sodium was also in reality much lower than what the results showed.

Would you mind explaining to me what the difference is in procedure between doing an ACTH stim through IM or IV?  I have no idea what method they used on my baby and it never occurred for me to ask.  Although I am not doubting the accuracy, I am still curious.

I will be very interested to hear what your endo has to say about considering an elevated sodium as an indication of extreme salt wasting.

All the best

Risty