I had Cushing's & left adrenalectomy 1974 and in general did ok with "bumps" along the road like all of you, though I was not on replacement for 34 years now.
Since before Christmas I've been again the sickest I've been for a long time. Nausea, no stamina & needing to lie down most of the day except for necessary getting up which I sometimes have not been able to do. That is scary, to feel like this.
I went to do a 24 hour urininary cortisol & am & pm cortisol blood levels. The am cortisol level was double the high normal. I started to wonder if physical trauma like falling on my spinal column hard so it hurt my nose/head severely followed a month later by another fall which was severely painful & then a 2 week flu could have caused or triggered what may be a cyclic Cushing's....I've felt Cushing's symptoms in lesser form over the last 10 years. Only blood tests 8 months ago showed a slight am elevation, but now it's double the normal for am levels.
Like I said , I'd appreciate any help if anyone has experienced this. I'd also appreciate connecting to your message board & website if anyone can help me do this. Somehow my ability to persist has been reduced....but I do need help.
I'm in Cairo & I will go to an endocrinologist today. But I am concerned about not being taken seriously as has happened in the past.... That happened to me when I was at UCLA and with other doctors prior to that over a period of a decade. So I suppose it was cyclic last time too. I gave my symptoms to a relative who was a med student at the time and heard the term "Cushing's". But told it was so rare. So I went to the Bio-med library & looked it up & realized that it was exactly what was going on.
I understood what was happening metabolically so tried to counter the symptoms just to survive--last time before diagnosis in re to sugar,fat & protein & electrolytes NA & K. By using mostly raw vegs. & using k foods & no sugar, fat & Na. & v. little protein since it was turning to fat... .I did not develop many classic symptoms except for moon face & buffalo hump, but no diabetes or electrolyte imbalance or heart. This time although the cortisol is high, my blood pressure is very very low. I can't go on like this & am so very cold & nauseated. I should stop as my appointment time with the doctor is now. Thank you for your website & the work you put into it. I'll look forward to hearing from you.
I just want to clarify that in the diagnosis of 1974 there was no diurnal variation between my am & pm levels. In the am the levels were v. slightly above the normal levels and they stayed at that same level for the pm so same amount of cortisol am & pm . The 24 hour urine for 3 days, at times showed above normal cortisol, but not always. They also did a dexamethasone suppression test.The definitive test was the painful , venography which they don't do nowadays. They saw the adenoma very clearly there.
Now x-rays taken earlier showed something on the right but nothing on the left side , so they were faulty & unclear. But when they exposed both adrenals,at sugery done from the front below ribs all the way across, it was the left adrenal with adenoma that was removed and the right adrenal was so severely atrophied that they assured me that I'll always have to be on replacement for the rest of my life....
I was v. blessed in that my right adrenal that I was assured by MD present at surgery was so atrophied that it could never be self-sufficient, actually worked and has been since spring 1975..... You were so gracious to respond to me, but I don't want to bog you down if there's a place where I can put my question in case someone has a similar situation, experience or insight?
My present situation : am cortisol is double the normal, pm cortisol is normal and 24 hour urinary cortisol is normal. So my question would be what would the meaning be for a high am cortisol? I have felt weak,no stamina, at times out of breath and v. low bp but my bp rose at the endocrinologist's 30pts upper figure & 20 pts. lower figure --perhaps because of my severe stress reaction whenever I go see an MD...Now no sleep since before Christmas, just lie down at night probably because of the high am cortisol level--double the high normal. Has anyone had that experience of only high am levels in the Cushing's group at any point?