My endocrinologist appointment as on Wednesday, 10/3. Another test result came back, which had been sent to an outside laboratory several days earlier.
My new endocrinologist said that the new test pointed more towards a destructive autoimmune reaction in my pituitary, rather than adrenal glands, but he wasn't sure yet. The pituitary gland issues commands to the adrenaline gland to secrete cortisone. If the pituitary gland is the problem, rather than the adrenal glands themselves, it is 'secondary adrenal insufficiency'.
He did a thorough physical examination and asked a lot of questions.
He had the lab draw an additional dozen new vials of blood, some to be sent to off-site specialty laboratories, e.g., San Diego and elsewhere. These results may take awhile to come back. I have a telephone follow-up call on the 29th, and then an office visit in December. I am starting off by tapering from prednisone. I will start initially on the Hydrocortisone replacement hormone on Friday the 12th. Later on, the hormone replacements might be adjusted. I will start with 20mg in the morning and 10mg in the late afternoon.
He also said that I need to get a medic alert bracelet and wallet card, which I've gone ahead and ordered. This is because that if I get a serious stress on my system, my hydrocortisone dose needs to be doubled or tripled. This is called "stress dosing". He said I'll gradually learn what the right amount to increase the dose is for me depending on the situation, i.e. getting the flu; getting hurt; a long rounds of diarrhea, and the like.
Normally, extra cortisol is issued by the endocrine system at these times to stop the body from going out of control trying to fight an infection or fix itself. If this happens and I am incapacitated, though, the crisis could be deadly. If I'm awake but nauseous and can't get pills down, I would need to go to an ER where an injection could be given. If not, EMTs always look for a medic alert bracelet. Mine will say Adrenal Insufficiency. Hopefully it will never need to be read.
[Before I saw the endocrinologist, I had my Monday, 10/1 infusion appointment. This was after the weekend I learned of my adrenally insufficiency condition. An assistant did the physical examination and asked some questions. After that my oncologist came in for maybe 3 minutes at the most, saying "I think we fried your adrenal glands". In his defense I did speak to a resident for 30 minutes the preceding Saturday.
I asked my oncologist (who I credit with saving my life in 2011) to refer me to an endocrinologist. He said I wouldn't need one, and that he would manage it himself. I said, what if I want it the treatment fine- fine tuned? His team did set up what turned out what seemed to be a "stat" appointment. I saw the endocrinologist literally 2 days later.]
My new endocrinologist said that the new test pointed more towards a destructive autoimmune reaction in my pituitary, rather than adrenal glands, but he wasn't sure yet. The pituitary gland issues commands to the adrenaline gland to secrete cortisone. If the pituitary gland is the problem, rather than the adrenal glands themselves, it is 'secondary adrenal insufficiency'.
He did a thorough physical examination and asked a lot of questions.
He had the lab draw an additional dozen new vials of blood, some to be sent to off-site specialty laboratories, e.g., San Diego and elsewhere. These results may take awhile to come back. I have a telephone follow-up call on the 29th, and then an office visit in December. I am starting off by tapering from prednisone. I will start initially on the Hydrocortisone replacement hormone on Friday the 12th. Later on, the hormone replacements might be adjusted. I will start with 20mg in the morning and 10mg in the late afternoon.
He also said that I need to get a medic alert bracelet and wallet card, which I've gone ahead and ordered. This is because that if I get a serious stress on my system, my hydrocortisone dose needs to be doubled or tripled. This is called "stress dosing". He said I'll gradually learn what the right amount to increase the dose is for me depending on the situation, i.e. getting the flu; getting hurt; a long rounds of diarrhea, and the like.
Normally, extra cortisol is issued by the endocrine system at these times to stop the body from going out of control trying to fight an infection or fix itself. If this happens and I am incapacitated, though, the crisis could be deadly. If I'm awake but nauseous and can't get pills down, I would need to go to an ER where an injection could be given. If not, EMTs always look for a medic alert bracelet. Mine will say Adrenal Insufficiency. Hopefully it will never need to be read.
[Before I saw the endocrinologist, I had my Monday, 10/1 infusion appointment. This was after the weekend I learned of my adrenally insufficiency condition. An assistant did the physical examination and asked some questions. After that my oncologist came in for maybe 3 minutes at the most, saying "I think we fried your adrenal glands". In his defense I did speak to a resident for 30 minutes the preceding Saturday.
I asked my oncologist (who I credit with saving my life in 2011) to refer me to an endocrinologist. He said I wouldn't need one, and that he would manage it himself. I said, what if I want it the treatment fine- fine tuned? His team did set up what turned out what seemed to be a "stat" appointment. I saw the endocrinologist literally 2 days later.]
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