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Weight gain; & Stopping Hydrocortisone
Diagnosed w/ secondary AD in 2011. Prescribed Hydrocortisone (HC). Within 21 days, I had gained 21 lbs. The prescribing endocrinologist (#1) denied that it was medication-related (contrary to findings in the med. literature). No follow up. Endo. #1 cancelled future ACTH. Have had a gastroplasty, so can consume no more than approx 1/3 of a cup of (a limited range of) solids or beverages at one time; it would have been nearly impossible for me to increase my food intake to cause such a weight gain.
Current HC dose is 2.50 mg daily (AM). Would like to discontinue it to see if I could drop the weight and determine if my cortisol level is within the Normal range. Understand that the ACTH test is the appropriate measure to determine same. (Is there another, reliable measure?). Current endocrinologist (#2) refuses to refer me for an ACTH. Even when I have seen her and am obviously struggling with very low energy, her reply is always, "Lose weight." On one occasion, the dosage which she mentioned ("7 mg") referred to Prednisone, not Hydrocortisone. A little worrying when MD doesn't know correct dosages for relevant medication, or isn't aware of her error.
Very difficult or impossible to be referred to another endocrinologist, since I have already seen 2 from the same group. Most endos. in my city are affiliated with the same university hospital clinic. Requested a second opinion, and was referred back to Endo #1.(!)
Any comments on recent medications for secondary AD? See excellent recent study: " What Is the Best Approach to Tailoring Hydrocortisone Dose to Meet Patient Needs in 2012?" by Miguel Debono, Richard J. Ross.Clin Endocrinol. 2013;78(5):659-664. http://www.medscape.com/viewarticle/803204. The group is researching three formulations: Plenadren, Chronocort, & an improvement on these 2-- that mimic the natural diurnal variation in cortisol.
Would appreciate answers to/ comments on the above questions, and any tips on obtaining quality diagnosis and treatment, and tapering/discontinuation with regards to 2dary Adrenal Insufficiency. (Regularly, I scan the medical literature for latest research on the diagnosis and treatment of secondary adrenal insufficiency, involvement of the H-P-A, axis, etc.). But I am not an expert.
Thank you. I look forward to your reply. The posts have been most helpful.
Current HC dose is 2.50 mg daily (AM). Would like to discontinue it to see if I could drop the weight and determine if my cortisol level is within the Normal range. Understand that the ACTH test is the appropriate measure to determine same. (Is there another, reliable measure?). Current endocrinologist (#2) refuses to refer me for an ACTH. Even when I have seen her and am obviously struggling with very low energy, her reply is always, "Lose weight." On one occasion, the dosage which she mentioned ("7 mg") referred to Prednisone, not Hydrocortisone. A little worrying when MD doesn't know correct dosages for relevant medication, or isn't aware of her error.
Very difficult or impossible to be referred to another endocrinologist, since I have already seen 2 from the same group. Most endos. in my city are affiliated with the same university hospital clinic. Requested a second opinion, and was referred back to Endo #1.(!)
Any comments on recent medications for secondary AD? See excellent recent study: " What Is the Best Approach to Tailoring Hydrocortisone Dose to Meet Patient Needs in 2012?" by Miguel Debono, Richard J. Ross.Clin Endocrinol. 2013;78(5):659-664. http://www.medscape.com/viewarticle/803204. The group is researching three formulations: Plenadren, Chronocort, & an improvement on these 2-- that mimic the natural diurnal variation in cortisol.
Would appreciate answers to/ comments on the above questions, and any tips on obtaining quality diagnosis and treatment, and tapering/discontinuation with regards to 2dary Adrenal Insufficiency. (Regularly, I scan the medical literature for latest research on the diagnosis and treatment of secondary adrenal insufficiency, involvement of the H-P-A, axis, etc.). But I am not an expert.
Thank you. I look forward to your reply. The posts have been most helpful.
HPA suppression is also referred to as SAI....it's really tertiary but they don't call it that in the medical community.,....not sure why.
Many of us gained like that....SAI from hpa suppression appears to cause large gains in weight even without HC.
Secondary means pituitary source - so when was your last pituitary MRI?
ACTH won't tell you really if cortisol is normal... once you are on replacements it is actually not really possible to test effectively for the dosage according to my doc. My doc uses the 24 hour urinary free cortisol test but says it is not perfect.
Not a doc but 2.5mg HC (is that your total dose?) is really low for a replacement - normally 20mg is an average replacement (5mg pred)- look up a steroid calculator.
As for the other meds - yes, they are superior to plain HC as they can mimic a normal body.
Weird that you gained so fast, on so little. Do you have a pituitary tumor?
ACTH won't tell you really if cortisol is normal... once you are on replacements it is actually not really possible to test effectively for the dosage according to my doc. My doc uses the 24 hour urinary free cortisol test but says it is not perfect.
Not a doc but 2.5mg HC (is that your total dose?) is really low for a replacement - normally 20mg is an average replacement (5mg pred)- look up a steroid calculator.
As for the other meds - yes, they are superior to plain HC as they can mimic a normal body.
Weird that you gained so fast, on so little. Do you have a pituitary tumor?
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