And It's About Time There Was Some Support For Cushing's!
I am 28 years old and have been having cushing-like symptoms for over a year now. (weight gain of 70lbs - I was always abut 130lbs, and went up to 200lbs (mostly on my stomach)despite working out w/ a personal trainer 5 days a week and eating 1200 cals/day while seeing a dietician, purpleish stretch marks, round face, hump on my back, increased acne(not too bad, but I never had any before) missed period for 6 months, fatigue, moodiness, my feet, legs, arms and hands fall asleep constantly and my feel frequently look purplish, NO excess body or facial hair though)
Anyway, I have been to my GP and she sent me to an internist after 6 months of complaining. He examined me and thought I had cushing's right away. Did some tests. My blood ACTH and Cortisol were high, urine cortisol was in the high normal range, thyroid etc. were fine...blood sugar a little high too. He said I had cushing's disease. He then did and MRI of my head and no tumor was shown, but did a dex test and that was neg. so he said I didn't have cushing's and referred me to an endo.
The endo right away said he didn't think I had cushing's because my dex test was neg. but it it possible I could have cyclical cushings but he wasn't experienced enough to diagnose it (although never offered to refer me to someone who was) He then put me on 15 mg Meridia to supress my appetite, despite the fact that I told him my dietician said that the amount of calories I am eating, I should be losing, not gaining.
He didn't seem to be listening to anything I said. I took the drugs, because I have tried everything else with no luck, so I thought it couldn't hurt. He also repeated some of the same tests the internist did. 6 weeks later I was to come back.
After taking the meridia for 3 weeks, I didn't lose a pound despite eating now only 1000 clas/day. Then I got my period for the first time in 6 months and I lost 10lbs very quickly. Great I thought! but my period was a few weeks late again, and I actually gained 2 lbs, then got my period and lost the 2 lbs again. I was down to eating 800cal a day as the meridia totally killed my apetite. I went back to the endo and his scale said I lost only 6 lbs (but the one I weigh myself on in the moring still says down 10) A
nyway, my BP was very high, and I asked if it was b/c of the drugs...he didn't think so (but it says it can on the box) I also told him that I am eating about 800 cals a day and never think about food anymore (not like I was overeating before though!) and that my dietician was concerned that my diet is too low and put me on prenatal vitamins to get more into me.
He just told me that I don't have cushing's and to not eat salt b/c of my BP and told me to diet and excersise. That is when I broke down in tears and said that if it is not cushing's what is causing all of this? I am barely eating anything, I am working out, I have all these other wierd symptoms and I can't lose weight. He said some people just gain weight, it could be a gene or something. I asked what I could do about it and he suggested that I look into getting my stomach stapled!!! I couldn't believe it! I had just finished telling him that I am barely eating anyhing. He didn't listen to or believe a word I said.
So here I am at the end of my rope, not knowing what to do. If it isn't cushing's what is it? I know there is something wrong. I have never been like this before, it just doesn't make sense!!
I was recently diagnosed with tachycardia and my blood pressure spikes pretty high some days for no aparent reason. My GP believes that something is wrong, but she has no idea what, and has run out of ideas of who to send me to.
So that is when my parents decided that enough is enough and my mom booked herself & I a flight to LA. We are going March 11th. I really hope Dr.F has some answers for me. I really should be in my peak health at 28 years old! I still work out regularily and eat well, but I can't lose a pound! It is so frustrating. I know in my heart something is wrong. (even though it is easy to doubt myself at times). I don't know if it is cushing's, I seem to have a lot of symptoms, but it could easily be something else the doctors have missed.... I don't know, but I really hope Dr.F will figure it out!!
I will let you know how I do in LA...I could use some sunshine right about now anyway! I do have to say that one thing sort-of positive about my whole experience is that my Boyfriend (of 5 years now) has been incredible. My body went from being slim & athletic to plus sized in a matter of months and he still tells me I am beautiful. He has been so supportive, I don't know what I would have done without him. We want to get married in the next couple of years, but I refuse to do that until I get this sorted out. I want to be healthy when I walk down that isle, and to feel good about the way I look.
I am hopeful that will happen, but it seems like I have been waiting forever!
