Desperately seeking help

My serum cortisol level is <1 and ACTH= 5.4. I take 40 mg Decadron weekly on Thursdays for Myeloma treatment and understand that this will lead to secondary adrenal insufficiency. I feel as though I am on deaths doorstep Monday through Thursday. My Dr tells me this is just how it works, but I am not satisfied with this answer. Any insights or recommendations. P.S I have been feeling like I was having adrenal insufficiency since well before the Decadron therapy started but my M.D.'s have declined to address my concerns for over 6 months.

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I would go see an endocrinologist. With the AI - you may need other support - as in florinef and testing to see if other hormones can be brought up to make you feel better.

Are sodium and potassium in range? Do you crave salt? Your ACTH is being suppressed by the decadron - but 40mg is really high. 5 to 7.5mg is a completely suppressive dose for the adrenals.

The once a week dosing schedule too - that would leave your adrenals high and dry - no tapering to get them to wake up and leaves you at risk for everything.