What should I be asking Endo about Adrenal Insufficiency

[gator457]

I am 76 recently diagnosed with Adrenal Insufficiency after being in hospital for another problem and sodium found to be low enough to cause seizures.  Endocrinologist consulted at that time.    Currently he has me  on Prednisone 5 mg - had been on Fludrocortisone also but was discontinued after MRI did not show any pitutiary tumor.

Current ACTH, Plasma low at 4.0 pg/ml.  Prolactin high 1t 26.8 ng/ml.  BMP levels all within normal limits after stay in hospital in May to solve low sodium problem with numerous IVs to bring it up to a current level of 142 mmol/L.

Have adrenal tumor and small pancreatic tumor of long duration believed to be benign with no signs of growth.

The Endocrinologist I am seeing has a practice mainly devoted to diabetes and bariatric patients.  Since I live in a small town he has no other patients with Adrenal Insufficiency.  My cardiologist thinks I should get a 2nd opinion at either Shands in Gainesville or Mayo in Jacksonville since this is not a normal everyday diagnoses.

What questions should I be asking the Endo MD - what tests should he be doing/how often.  Had the Cortisol test done.  Was at 1.0 at 8 am and after Cortisol injection an hour later was at 9.7.

I have read many articles but they are not clear and I am appealing to the community for their experiences and input.

[gator457]

Thanks, Gail

While on the Fludrocortisone that disappeared but since being off of it the cramping has reappeared but the Endo is hesitant to restart the med.  I think that I am going to take your and my Cardio's advice and ask for a 2nd opinion because I had a long time friend who died quite awhile ago but, I just recently learned, the cause of her death was due to the Adrenal Insufficiency.  Amazing what you find out when you reconnect with common friends of friends and talk about old times and people we knew.  

Currently, I am just buzzing along with the Prednisone  - it is not a plesant thing to take but I have been warned NOT to go off of it and told if I am ill - ie flu, etc - to double the dosage during any such illness.  

I like the Endo I am currently seeing but just question, due to living in such a small area and exposure to AI patients, if he is the right one to handle this - being OLD ( ain't it a hoot) has its own problems and also having heart problems, just think maybe as you say, maybe Mayo might have more hands on time and experience and be better able to just answer my questions and tell me whether or not the Endo I currently see either is or is not doing what is right.

Jean

[ggreg]

Hi Gator!  I am 65, so we're practically related!  SMILE.  I have adrenal insufficiency, I see an endocrinologist, so I agree about you seeing a diff specialist, perhaps the Mayo Clinic one would be best.  They will know precisely what to do.  But I need to advise you that the medicines for this condition can be very difficult, in that they sometimes worsen existing conditions, in which case you have to arrange for those docs to handle any increasing of those drugs.  As for what to ask in the way of tests, THEY will know, the specialists will take your history and will try some things out on you, take some blood, and arrange for various other later tests and medications to try out, so they have a full picture of your complete endocrine system and how it is interacting with your other glands.  But for certain, you DO need to be on a steady medicine, you DO need to see these people regularly, because an adrenal problem is somewhat rare and is nothing to fool around with, very serious problem!  I hope this little bit helps, and obviously read other posts to gather more info.  Gail