Hello, my name is Emily. A few months ago I was “diagnosed” with Cushings Syndrome as I had very high levels of cortisol.
I was sent to a ENDO Dr. & most tests came back saying I have it. But two tests, like the salvia midnight test said the high cortisol dropped a little bit at night which indicates I don’t have it, and the surpression pill test also dropped my cortisol level. But the 24hr urine test and regular blood tests at 8am (done severl times, on different days), says I have extremely high levels of cortisol, which “stumped” the Dr. In the same sentence he told me I have Cushings (on paper), but by looking at me, I don’t have it at all and would be the first case he’s ever seen that had Syndrome but don’t have the physical signs (eg., I don’t have purple stretch marks but have some white stretch marks on legs, I’m average slim build but just recently have gained some* belly midsection weight that I can’t loose, I have only some* facial chin hairs but not a lot yet).
I do have most other symptoms of Cushings including changes in menstrual cycles, night sweats, fatigue, anxiety for no reason and never had problem with that before, have fractured two ribs easily in the last year, weak muscles at times etc. In my initial blood work, it also showed I had no estrogen which the ENDO Dr. didn’t investigate.
My last phone call with ENDO; he basically said it appears I have it on paper, but not by looking at me and therefore his conclusion is I don’t have it, and nothing can be done at this time.
Have any of you on here experienced anything like this? I’m getting a second opinion at the Stanford Hosptial in the Bay Area of California, and driving a good 4 hours to get there. Hoping I get better results.
Also…I’m not a heavy drinker, don’t smoke, never had a problem in past of depression which can also lead to Cushings. I’m 33 years old and although usually healthy, I’ve been experiencing these symptoms for maybe 2 years?? Not as persistent until recently though. What got me to go see a general practioner to begin with was no menstrual cycle at all, or very irregular, nausea at times, night sweats, loosing some hair, breaking out on face, fatigue.
Any help or anyone that went through something similar & can help in knowing what to do, will be greatly appreciated.
Thank you!
HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki
Oct 22, 2016 @ 21:20:51
I was the same way. I never got any of the stretch marks but eventually I did get the fat lump at the base of my neck between my shoulders. I noticed my face rounding years before anyone else did and my surgeon had to see before and current pics to believe me. I would tell you to find another endo and make them do an scan to see if they can locate a tumor on your pituitary. Don’t give up until you find a Dr who wants to help heal you!! Many of us who have had Cushings struggle to find that right Dr, so please don’t get discouraged, just keep fighting for you.
Nov 04, 2016 @ 00:58:48
I was told I didn’t have it although I suspected it 10 years before those tests were run to prove it. The found my diagnosis via an x ray after a kidney stone (adrenal tumor). I had 7 of the 10 most common symptoms.
My levels were on the low end too, if there hadn’t been an xray already showing them the tumor, he would have said I didn’t have it.
I’m now 8 month post surgery and down almost 60 pounds! I have Addison’s now, and pray that one day soon I can stop being dependent on prednisone. I take only 2.5 mg/day, but can’t seem to get any lower. But, I’m finally starting to feel better, healthy again.
Keep the faith!