March 12, 2019 at 11:46 am #6570
Hi, I was diagnosed with adrenal macronodular Cushing’s, as I had benign adenomas in both adrenal glands. I had a bilateral adrenalectomy in January 2019 and was discharged on hydrocortisone by the surgeon. However, my endrocrinologist found it strange that I was not prescribed Florinef as well. When I asked the surgeon, he said that sometimes Florinef is not required if there is a sufficient dosage of hydrocortisone. I was discharged with the dosage of 30mg Hydrocortisone am and 25mg Hydrocortisone pm. He said this was a stress dosage and knew that I would be adjusting it after my appointment with the endocrinologist. After the first few days, I had insomnia problems and my endrocrinologist reduced the dosage to 20mg for the am and 10mg for the pm. A week or two later, I began to experience adrenal insufficiency symptoms such as severe fatigue, weakness, aches and nausea. I am now trying 30mg for the am and 10mg for the pm. I have done several blood tests since the surgery, and my potassium levels have been in the normal range. My question is whether anybody is taking only hydrocortisone post- bilateral adrenelectomy.March 12, 2019 at 11:53 am #6576
Hi Stacie, I am not an expert on BLA but my understanding is that you must take both hydrocortisone and florinef after a BLA because both are essential. Somehow, perhaps your surgeon was not aware of this. It’s confusing that your endocrinologist doesn’t seem sure about this either.
A quick copy and paste from sharecare about aldosterone, the hormone replaced with the florinef: a hormone that acts mainly in the functional unit of the kidneys to aid in the conservation of sodium, secretion of potassium, water retention and to stabilize blood pressure.
One guess is that perhaps your surgery was so recent that your body has not yet reached an urgent point with declining aldosterone. I could be wrong, but please call your endocrinologist ASAP to discuss this – hydrocortisone at any level does not replace aldosterone. If this endo is not the one who diagnosed you and sent you to surgery, case call THAT doctor. Please also read up about and find support for adrenal insufficiency at Adrenal Insufficiency United – they are on Facebook, or aiunited.org.March 14, 2019 at 11:45 am #6581
Thank you Leslie. I met with my endocrinologist and she confirmed that I will need to take Florinef, but my potassium levels are currently quite low, and she does not want to reduce them further by starting me on it now. We will be keeping an eye ont electrolytes in the meantime.
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