Hi Donna,

It’s possible that you may need to increase your dose just a tiny bit to say 5.5mg Pred. This might make all the difference and bring your level down a fraction. BUT talk to your doctors re. whether this is feasible to do.

Did you have both adrenal glands out or only one? It’s certainly surprising if you have had both adrenals out for you to have these kind of levels. If you have no adrenal gland then you would be producing very little 17-OHP and the Prednisone is given as a replacement for your lack of Cortisol and to suppress your ACTH (not to help suppress 17-OHP). 

 For you (if you have at least one adrenal gland) it is acceptable  to have 17-OHP levels around the 600 -1,200 ng/dL mark. Expert endo’s seem to indicate that a higher level is acceptable for CAH but yours is just a little too high at 1600’s.

It certainly will be interesting for you and your doctor to see the results of the scan. Have you been diagnosed as having Polycystic Ovaries as well? CAH women are prone to PCO and often weight issues arise from this. Maybe someone else can fill you in more on this.

How have you been feeling with levels of 1600 ng/dL? Lately when I get up around the 1600 -1800 level I start to definitely feel unwell. I’m getting better at predicting when my 17-ohp levels and ACTH are up, as I get ’internal quivering’ - likes shakes on the inside, a cough or my asthma worsens (don’t quite know how they interrelate), pimples on my face, more easily flag in my energy levels, flank pain.

Don’t know if I have dealt directly with your question but hope it helps a bit anyway.