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Angry, confused, and a little scared.

Guest Jill


Hello everyone, I am back. I visited this forum about 18 months ago. I have had cushing symptoms since around puberty and i will be 30 in June. A little refresher, at puberty i was seen by an endo who told me to shave my face and my other symptoms were just because i was going through puberty. My youngest son just turned 2 in Nov, and after having him my body went crazy. My blood pressure wouldn't normalize, always tired, blood sugars are all over the place, sleep apnea, weight gain ( after birth) and 21 rounds of antibiotics in a little less than a year so roughly twice a month. My primary care did a complete history, and the Cushings was revisited, so labs were done and endo appt. The endo was a jerk, no bedside manner, and refused to even consider cushings, stating i was just obese and depressed. I wouldn't leave his office until he ordered a 24 hour urine cortisol, it's my body right? So he ordered it, to humor me. Results came back high, i literally cried with this proof that he wouldn't listen. Nope, not to be, called his office, they had recieved results but no further appointments needed to be scheduled. He blew me off, back to primary care who was just as frustrated as i was. Off to a new endo, unfortunately it was just as bad, although the bedside manner a little better, still wouldn't consider cushings and more concerned about the fact i snored said i had sleep apnea, and needed to lose weight. No follow up appointment, no further testing, no nothing. So there i was, frustrated, with labs to prove i had cushings and no one to listen except primary care. Then my primary care finished her rural contract and i started over with a new doctor who like the rest said i was just obese and there was no point in wasting anyones time or money trying to find something that wasn't there. So about 4 months ago i switched offices completely due to insurance. I have now been on antibiotics 32 times and have gained 30 more pounds putting me at 240lbs and 5'6 my weight is mostly abdominal, i can lose about 10 -20lbs with diet and exercise but that's it so i give up, and gain it back. I still have issues with blood pressure, exhausted all the time, feel run down, bruise easily, cuts take forever to heal, and i just hurt. Friday night i went to the ER for abdominal pain, they thought appendicitis, which thankfully was just a bladder infection, although they did an abdominal CT scan. The ER doctor came back and asked who my primary care was, i told him, and he then came back and sat down. Said i have good news and bad news, the bad news is you have a tumor on your right Adrenal glad that is 3.6cm, and your left kidney is covered with cysts. Good news you don't have appendicitis. Primary care follow up monday for an ultrasound study. So that's where i sit now. I've done all the research i can with the internet, and everything keeps pointing back to Cushings. I'm so angry that no one would listen a year and a half ago, at myself for giving up and not being more proactive with my health, confused that it may not be cushings and could be something worse. I haven't seen anything that talks about kidney cysts with cushings, so i'm up in the air with that. Any help or comments would be greatly appreciated.














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So sorry to hear you got the run-around, which so many of us can relate to. I am glad to hear they finally found your tumor though. There have been people on these boards with kidney cysts and Cushing's but it's been awhile and I don't remember who they are. I seem to remember that a Cushing's expert, Dr. Ludlam, who used to work in Seattle told patients that cysts anywhere in the body are common with Cushing's. For example, I have a pineal gland cyst and liver cysts. My liver cysts have shrunken though since my last CT scan--I am currently in remission from Cushing's so perhaps the high cortisol was indeed causing these cysts. Perhaps someone who knows more about kidney cysts will chime in here. Good luck with everything.

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