Hi all. After three years of suffering with not feeling well, I finally found some info here and online that led me to seek out an endocrinologist who understood Cushing's. I saw here on Wed this week for the first time, and she ordered a battery of blood work, plus the midnight saliva test and the overnight dexamethasone suppression screening test. It's the last one that got me scared.
I took the 1 mg pill at 11 pm, and at about 4 am I awoke with a weird cramp in my upper right chest. I went to pee and came back to bed, and started noticing tingling and numbness and pins and needles (yes, all of these, in and out) going down my left arm. I just observed it for a bit, wasn't thinking anything of it and then remembered, "Oh hey, that's maybe a sign of something..." and I sat up to get out of bed. When I put my feet on the floor, my pulse started banging in my ears. I put my fingers up to my throat to feel my pulse, and it must've been 120 beats per minute.
Needless to say, an ambulance was called. They took my vitals and said I was having a panic attack. I was like (excuse my French), "WTF kind of panic attack is that?" I've never had anything CLOSE to that before. Since they said it was a panic attack, I didn't go to the hospital.
I spoke to my Endo who insisted I follow up with my PCP, which I did. For the first time, she understood all my symptoms of the last three years as I explained the Endo was doing a Cushing's work-up. What has been/is most concerning to me is the idea that rather than a pituitary or adrenal tumor, I may have a lung tumor...would that explain why the steroid pill and subsequent increase in cortisol gave gave me a constricting feeling in the chest (and the numbness down the arm?). One of my on-and-off symptoms the last two years has been a strange tingling and pins and needles and cold feeling (yes, all of these) in the middle of my back and down my arms.
So the PCP sent me for a chest x-ray...and I suppose I will have an answer about that in the next day or two. The blood work and labs from Endo come back probably the beginning of next week (week of 25th).
I don't really know what my question is so much as I felt the need to tell a story, as incomplete as it is written here.
Thanks for listening! Best to all of you....
Make sure you get a copy of the blood tests and all the reports like form the x-ray and the MRI when you get it. The chest x-ray is just to make sure you don't have any lung nodules. I just met this past weekend someone who had Cushing's from lung cancer - called ectopic Cushing's. An x-ray is a first line test and is fine. Her docs almost did not run any lung testing so they almost missed the cancer! I have no idea about the tingling, but a lot of us have weird BP and pulse issues.
Stories will be written as they come... let us know when you have an update.
Yeah, the ectopic Cushing's is the one I am most worried about, because most of the ectopic (not ACTH-dependent) cases of Cushings are indeed lung cancer, according to what I've read. My mother died of a very fast-growing lung cancer in 1969...and it was after reading up on Cushing's that I got really worried, because I remembered that she had the buffalo hump: I can't confirm now IF she had Cushings...but the question then arose in my mind. I've been reading a lot of abstracts about Cushings the last 10 days (and no, this is not usual for me, I am not a hypochondriac, I am not wishing a rare disorder on myself, I am not some crazy hysteric))...somehow, knowing as much as I do now didn't help me this weekend when my PCP had me go into the ER to check my continuing shortness of breath.
I had a terrible experience there. Because the symptoms commenced during the dexamethasone suppression test, I felt it was important to relay that info to the ER docs. And because I presented with no real other heart attack signs other than some discreet chest pain and shortness of breath, after reviewing me, the attending Dr.'s told me to go to their Psychiatric clinic because he thinks I have a panic disorder. I guess they just saw me as one more hysterical woman, or a woman craving attention with a rare condition. Whatever, that one attending Dr. was completely condescending and rude.
And that is really disheartening. This is why I've always stayed away from Drs! But the past three years I simply couldn't have...although I only went to complain about my symptoms once or twice a year. It was only this last round of (what I feel is a cyclic thing) that I just took the bull by the horns and said I need to really find a knowledgeable Endo. I hope I have...she says she has treated Cushings before. What kind/how many, I do not know. But. Anyway. Chest x-ray is clear. Next steps: waiting on endocrinology labwork, and I guess I have to follow-through on the stress test this week, although I really don't know where I will muster the energy to do it.
Thanks for listening friends. It's really nice to have an ear, and get reality sense from others who have walked these same paths.
Ah yes, ye olde "you looked on the internet and picked a disease for yourself" arguement - and yes, I would pick a rare, dog disease that disfigures me and oh yeah, since no one understands it - is next to impossible to diagnose...
Cushing's causes emotional disorders - google it...
I hope your doc really has treated Cushing's before (many say they have and have seen one or two cases) but I really advise you to see an expert, It really cuts the testing and treatment time.
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