Cushings Syndrome finally diagnosed

Hi there!

I am 23 days post-op Lap RNY. On day 19 I was diagnosed by my Endocrinologist at UAB's Kirklin Clinic with Cushings Syndrome.

I have always suspected that I had it- For the past 4 yrs, I have been experiencing every symptom that you can have, but my 24 hr urine tests always came back as in the high normal range.

In August of 2009, I begged for the Dexamethasome Cortisol Surpression Test! All of the previous Dr's told me if I would just lose weight all of my symptoms would go away because Cushings is sooo RARE that it was so very unlikely that I would be the one in a million that had it...

So, here I am Gastric Bypass RNY POST-OP with my anatomy permanently changed to come to find out that I was right and that my weight gain, is indeed, caused  somewhat by the tiny tumor I have inside me on either my pituitary or adrenal gland.

If anyone has any advice or info on this Disease I would very much appreciate your letting me read your wisdom on the subject...

If YOU HAVE CUSHINGS PLEASE RESPOND and become my OH 'friend' so we can go through this together.

Thanks in advance for your taking the time to reply.

TAKE CARE and may God Bless you...

Lisa, would you please tell me what symptoms you had that made you suspect the Cushing's?   I am almost 4 years post op and am beginning to suspect this of myself.   I initially lost 126lbs; lost 105 in 6 mos. honeymoon and the other 20 in the next 6.   About 1.5 years out I got hit with many serious stress situations right in a row and I knew I was overloaded on the cortisol.  I began having psych issues I put down to low B-12 being leached from the stress but while supplementing helped it didn't rectify things and the pounds (no matter how many 5dpt's I did) just kept steadily packing on.   I just happened to be investigating hormonal/endocrine stuff the other night and came across some pics of cushing's patients and they look like my body...what it looked like before my RNY and now again that I've put on almost 50lbs in 2 years since these stresses started.  My chiro noticed and mentioned to me edema in my wrists and ankles and asked if I were under stress, having headaches or sleep issues.  When I said yes he checked out my adrenals and said they were inflamed and began working them at each of my visits.  Chiro has helped alot with anxiety and depress and cognitive issues but bloat and "kidney" pain is present.  I feel like I might be whining; maybe I'm just not trying hard enough, maybe too many carbs have crept back in but I listen to my surgery buddies talk about how they eat and what they eat and while they are fearful of gaining 1 or 2 pounds they don't believe it possible they could gain what I have in 2 years, nor might I add, does my surgeon.   The theory is I must be eating non-stop and I'm not.   (I will admit my desire to eat is almost non-stop and I fight it constantly which is why I get so mad when I go back to basics for 3 weeks, convinced I'm not trying hard enough only to GAIN 2lbs.)  I THINK the stress of trying so hard is actually producing more cortisol which is packing on those 2lbs!  I don't understand why I've packed on this weight and those folks are "cured".   I don't feel cured by RNY of my obesity disease and I wonder if the disease I had before and still have is really Cushing's.  BTW, in my research thus far, Kirklin is mentioned as one of the best for Cushing's; you are lucky to be in their vicinity.   I think I'll go research who is here in PA.   Thanks for letting me go on about this...I'm a little nervous.   J.

Jackie,
I feel for you about your weight gain... it truly is so disheartening when you are really trying to play by the rules, yet to continue to gain weight... that has been my life for the past 4 years. My other symptoms are so many, but, here are the worst ones...

*My hair has changed texture... it is wavy now (was dead straight), more coarse (was fine), thinner (was very thick), and falls out (way before RNY).
*Hair on my body where I do not want it: My neck and face, my inner thighs and about 10 hairs per breast... yeah...
*Skin tags, moles on neck and chest...
*Strange raise mole-looking rash on my feet/ankles/lower calves...pretty huh?
*Totally exhausted with zero energy, and extremely depressed... More fun huh?
*Buffalo hump on the back of my neck (fat on top of my shoulders) THIS is one of the tell-tale cushing's signs...
*Trunkal Obesity is what the Cushings Experts call my stomach! It is hard as a rock and looks exactly like I am 7-8months pregnant.
*I bruise so easily...do not touch me too hard, or you will see it tomorrow.
*It takes forever for a scrape, bug bite, wound, etc. to heal...
*My eyesight is definitely changing for the worst.
*The skin on my hands is definitely thinning...oh, and the age spots on my hands are totally gross...they look like old lady hands, not 39 yr. old hands!!! Lovely.
*I feel like I need to urinate, but, I barely have anything come out!
*My face is so red (on cheeks) I look like I am on FIRE...and most of the time I sweat when no one else in the room is even remotely hot! Ridiculous!
*MOON FACE-another Cushing Term... I always had a round shaped face, but, I just look like I could POP! I really look like a monster compared to what I looked like a few years back!
*My lower back and body is very prone to fractures and brittle bones...
*My skin is so dry, and I have 'cotton mouth' all day long.
          (I could go on, but, I think these are the major symptoms that I have been dealing with)

There are only 3 other symptoms that I do NOT have that are common with Cushing's:
*Irregular/weird periods
*Acne
*Horrible stretch marks across abdomen/ breasts and outer upper thighs...

I hope this helps...

Jackie, PLEASE DO NOT give up even if every doctor tells you that you are crazy, and that you are just FAT!!!
I cannot believe that I was one of the 15 in a million that get diagnosed in a year!

I really wish I had pushed harder to find out if I had Cushings before I had the Gastric and changed my entire life...but, I think the RNY will be beneficial in the long run...
 
Good luck, God bless and keep me updated on your journey!

Lisa

I also supspect I may have cushings,  have for a few months.  All of your symptoms you just described I thought you were talking about me!  so I have a couple questions,, if I do have cushings, will this surgery help me with my weight still??  is there a treatment for cushings?  My surgery is next week ,  i am going to get tested for cushings after that sometime.  
thanks
cybil

Lisa,

I also live in Birmingham and had gastrix bypass in 2007.  I am having the same issues but am having a problem finding a dr knowledgeable about cushings.  my symptoms are compiling daily .   Who was  your Dr at Kirklin ? 

 

Thanks , 

Susan