It’s taken me a while to gather enough courage to publish this page. One of the hardest things about Cushing’s is the lack of control over your body. The only way I know how to describe it is this: feeling as if your body is possessed by something. No matter what you do, you cannot control it. At the time of my last trip to Europe, I was at the heaviest I’ve ever been. And probably at my most desperate. Nothing I did seemed to work. I just kept gaining weight, growing hair in gross places. Acne everywhere. Boils on my skin. I was so tired all of the time. And so, so, so depressed. And I went from my “normal” self to looking like that in just a year and a half. That’s how big of a nightmare this disease is.
I pondered this for a while and decided that the proof is indeed in the pudding. I needed to see the progress myself, complete with pictures of me at the worst, to reaffirm how far I’ve come. I’m sure that others coming to this site for more information and support also need to see that there is hope. That you can beat this disease and take hold of yourself again.
It’s hard for people around me to note my progress because they see me every day. So, here is the proof and extra reaffirmation to myself and others suffering from this wretched disease.
A big thank you goes to one of my very best friends in the entire world (literally), Kristina. Snart, love. Snart! 😉
Me at my “normal” weight when I’m not doing anything to either lose or gain…just simply existing; me at the height of my illness (and at my heaviest weight and most miserable); me four months post-pituitary surgery. The caption says 6 months but it’s closer to 4.5 months. I had my surgery on December 23, 2008, and this picture was taken on May 2, 2009.
Me at the height of my illness in September 2008. Horrid dull complexion, greasy hair (no matter how many times I’d wash it) and boils on my arms though you can’t see them in this picture. You can see how my eyes almost seem to be sinking into my face and also the hyperpigmentation on my jawline from all of the acne. The second picture is me 4.5 months post pituitary surgery. My complexion has cleared up and I no longer suffer from acne. And my hair is no longer greasy. Success!
At Heather’s request, I’ve added a picture of us before I got sick, without staying in the hospital for 12 hours with greasy, unwashed hair and no sleep. This was us only a few months before Cushing’s began hitting full force (May 2007). We were hot. 😉
Here I am, almost six months post surgery. My complexion is super clear, hardly any acne, and my skin is glowing again. Plus, my face is skinnier. Official weight loss at 6 months is 27 pounds!
So I’m a little behind in posting…but this is a picture of me with my father on Christmas 2009, a year to the date of my surgery. Big improvement! I’m very happy! Official weight loss is 35 pounds.
Update, May 2, 2013: I didn’t realize it’d been so long since I had posted pictures! Time to show some more progress!
This is a picture of me, dated January 2013. I have now had two pituitary surgeries, the second being the closest to successful. I’ve lost 50 pounds (I gained twenty back, and now I’m slowly carving that weight off), but I’m still not losing ALL the weight. I’m concerned that I am about to undergo another recurrence, especially given my recent MRI results. However, I do “look” like myself in this picture, and my skin is healthy. This is definite progress!
Surgery Pictures (First Surgery, December 2008):
Living with Cushing's Disease 
That is so awesome Rach… You are looking like the young beautiful woman i know. I am so happy u r getting better. Chin up sweetie
holy crap. that is crazy to actually see it all side by side. kind of amazing actually.
Michelle Pamir at 09:03 on 07 May
you look great, wish i was coming back with an amazing transformation!
Kerry Iaderosa at 10:53 on 07 May
hot mama! you look great!!! so happy! Early had to die!
A.MAZ.ING. Wow. Not only can you tell in the weight loss but you’ve actually got your glow back! Your skin looks refreshed and you don’t look as worn out.
The proof definitely is in the pudding . . .
I know that you wish that the changes had happened sooner but these pictures prove that the changes are there!
I truly wish you all the best in health and life in this new year. You certainly don’t deserve this dish that was served up to you, but if anyone can handle and beat this crap – it’s you. My prayers and positive thoughts are with you daily.
Again, I swear we are sisters. Our pictures before and after surgery are so similar. Keep up the good work. I found exercising 30 min a day helps with my energy as well as cutting simple carbs and sugars. It sucks but it works. Take care, Alicia
hi…i have been reading about cushings…..i read your story and nearly fell over…i am going through EXACTLY the same thing. im going on tuesday to ANOTHER doc. ive given up on my primary care doctor all together….how did you feel on a day to day basis? did you have good and bad days? i feel like some days are ok….but some are bad…..ive been tested for every kind fo arthritis…diabetes…pcos…need i go on? my symptoms include joint pain( hips and ankle/feet…buffalo hump…round face…acne…poor healing *bugbites! etc….stretchmarks…blurred vision…migraines….swelling of my hands….and recently getting some numbness in my feet randomly……they told me i have gout…..really? im a nursing student…..and i KNOW that its not gout…..considering is EVERYWHERE BUT MY TOE! and my uric acid was just slightly high….ive also put on 75lbs in 3 years……..im hoping cushings is my answer….and i can get a solution, im sick of pills being shoved down my throat……i dont want another pain pill damnit….i want an answer!
Thank u so much for sharing!! I had my doctor appt this week n he thinks it is what u have !! Blood work n specialist is next week n I am scared!! May I ask why u got this?? In my cause shots of steriods n neck n back n think to many n may have leaked!!!! I are beautiful n I can’t imagine what u have went through n stay positive!!! I am keeping my faith but what my body has gone through already I feel so uncomfortable ! Hair going on my face ! Cellulite all over back n stomach!! N I won’t lie I am vain. Put the pain n uncofortable then looks. Is a lot. If u have any advice for me I would be extremely great full!!! My worst fear is that I won’t be able to give my husband a baby! Do u know if this ( Cushing disease ). Can stop u from carrying a baby or getting pregnant ! N also how long did it take u to find before u were diagnosed !!! Thanks for ure story!!! People don’t even regonize me
Good look ! I find out next week if I have but gained 23-25 ! In less or about sixs week. My doctor is amazing n takes the time to listen to everything I say!! When no other doctors or hospital has been. I find out next week if this is what I have and scared. I am hoping that u find answer soon n get the right treatments
Sorry u r beautiful
thanks for writing this – I was diagnosed with Cushing’s in June 2k11 and have had 2 pituitary surgeries…throughout the course of my illness, I have gained 75 lbs, which has not been fun. It’s good to know there are others out there like myself – I haven’t found too many personal articles about living with the disease. Are you aware of any support groups or anything? If so, email me @ CopelandLE@gmail.com if you don’t mind, please 🙂
Thanks again and I’m glad you seem to be doing so well!
Laura
Laura,
Are you a member of the Cushing’s Help forums? There you will find a good chunk of Cushies who understand what you’re going through. A friend and I will be talking soon about forming a physical support group, so we’ll see if we can’t get something going. We need each other, that’s for sure!
Where do I find the Cushing’s Help forums? Sorry for the late reply – I just saw that you responded!
cushings.invisionzone.com
Also, please email me anytime. cushieworld@gmail.com. I’d love to see if I can give you some advice and help you. I’m not out of the woods – I don’t think we ever are – but I’m feeling as normal as I have since 2007, so I’ll take it.
HI, I was diagnosed with Cushing’s this past December. Mine was said to be due to the steroid injections I was forced to take as I was the victim in a law suit where I was injured in 2 car wrecks 2 years ago and injured my neck and back. My lawyers and insurance company said I had to jump through all the neccessary hoops to comply. Next thing you know I developed this syndrome!! I feel like such a guinny pig!! My cortisol levels are slowly revealing that I am doing better, however, my body shows and says otherwise. Has anyone else experienced this? If so, how did you cope? How do you lose weight? My endocrinologist says there’s nothing I can do about it except be patient, well screw that! Since then I have lost my job and my insurance so now what????
I’m so disgusted with myself, my doctors, and life in general. Now to top it all off, my attorney in my lawsuit (for my car wrecks) have just notified me that they have decided they are unable to represent me any further sue to they feel I may have a medical malpractice case!! So now they have dropped me, I not only have to find other repesentation, but I onlyhave a year left in my case before the statutes of limitation run out on my case all together!! What a crock! First the wrecks, then I get booted from the nursing program at my school due to missed days because of my dr appointments, then I get sick, which takes almost a year for any one to figure out why, and all along my body is transforming into this monster, next I lose my job and my insurance, what’s next?!?!?!?!
If ANYONE has any help or knowlege of how to cope and LOSE WEIGHT……
PLEASE HELP!!! I’m losing my freaking mind here!!!
hi could you please tell me who decided your cushings was from the epidural injections. i swear thats how mine started but i cannot find a way to confirm this. is this a seide effect? common or rare?
thanks!!
No one decided they were from epidural injections. I did have epidural injections for a fractured foot, but my Cushing’s had already started and that was a side effect (brittle bones). My Cushing’s was entirely pituitary-dependent, meaning it was an ACTH-secreting tumor in my pituitary gland. I don’t think anyone – patient or doctor – has a clue just how Cushing’s starts, but we all have our suspicions. You can get Cushing’s Syndrome from epidural injections, or taking too much oral steroid for another condition, but I do not believe you can get Cushing’s Disease from that. Hope this helps!
I am so sorry! N now really scared!! I two was in car accident with neck n back injuries. I tried so hard to do everything heathy before but doc then referred shots. 40 cc in neck n 40 cc on back. After first shots I called orthpedic office n said I am having a very bad reaction my body has gaps crazy weight head aches worse pain called hospital ! They all brushed me off. They said have to get round of shot for three aweek with skipping week in between!! Every time I called dr n hospital stressing my pain n how really resting weird asking to hwt in right away ! Need emergency visit cancelation list …….. All ignored. My appt time came up saw him like week after last shot( don’t hold to when) weds they said to come back this Friday to schedule appt for surgery n talk appt what best for u. Went in Friday n he told me there nothing wrong with my neck n I only have one small boldging disc in lower back!!! He was treating me for three hernited disc on neck n two in lower back. Anyway ! Can u please email at Kim.salotto@yahoo.com. I not going home for Christmas to spend with my family n three new neices (1 do any day now). N have not told my family cause find out results next week n I want them to enjoy there x mas n not worry. My husband. Supportive but doesn’t know much !! Please if u have the time email me. Thank u n hope u r doing ok n have good support n love around u!
Hang In there! I am going thru carwreck/lawsuit hell, too! Have you found another lawyer? What state do u live in? You can call your state bar for an attorney referral. I have had tremendous weight-gain as well, and no one has found out why, except that I have some food allergies (wheat, cow’s milk, corn, eggs, peanuts), and I have candida overgrowth that originated in my intestines, but spread to my bloodstream, and organs. (Probably caused by stress) Overtook my thyroid, so I am on medication for both, but no weight loss. Of course, my injuries from the wreck keep me from exercising (severe back, neck inj, and a torn meniscus in my knee) 17 months, and not a penny from her insurance co.! My e-mail is gaylynne2@yahoo.com, if you would like to keep in touch. I am here, bec. my stepfather watched Dr. Oz, and thought that I might have Cushings. Will be pretty sad if numerous drs. couldn’t find out what was wrong, and my stepfather did! We will see-they found all kinds of things wrong-just not what caused this weight gain of appr. 5 lbs./week-EVERY week… I feel like the pillsbury dough boy!
Why don’t they tell us that this is side effect;:(. I find out next week
I am in the same situation as far as car accident then shots in neck n back!! I cried out n said the shots were doing bad things to my body makin me feel worse n no one listened!! Now I have test today to see if I have this!!! Please, if u think u can help me In anyway please e mail me at Kim.salotto@yahoo.com!! I hope u r doing better n things worked out for u! Thanks !!!
can you get cushings from insulin injections
Hi, Lisa. No, I do not believe insulin injections causes Cushing’s, though insulin resistance (inability of your body to properly use insulin) is closely related to Cushing’s. I took the drug Victoza for a bit trying to fight insulin resistance and ended up in the hospital with pancreatitis. So definitely be careful with insulin injections and monitor your body’s reaction.
thank u rachel. i believe the insulin has affected me. i was healthy and fine before i started to take it. now my whole life is upside down with this sickness. they want to do surgery but i hear the european commission has approved a new drug that has been working for cushing’s. so i want them to try it before they go into my brain.. so many horror stories of the surgery not working and then they put u on a whole list of medication…
You are so beautiful
Thank you! 🙂
I had cushings disease and had surgery in 2008. I am well and still get checked every year, but it was a horrible time until I got diagnosed!
Do you feel normal now? What surgery did you get and where? Did you lose face weight? and if so how fast did it come off? LOL How many questions can I ask?
Lynda
I have been dealing with it since 2006 myself took me forever to get my body stable finally lost the weight from 200lbs to 120lbs I do however needs to go back and see the status of the tumor I still do feel like my joints are not as strong as they used to be I hope I can overcome that too. Wish you best of luck and congratulations
Ali, how’d you lose so much weight??? My joints still feel painful at times, but I just keep chugging along.
My issue is similar but doctors call it pituitary adenoma, but the symptoms are pretty much the same so not sure why they didn’t they use the same name. But any ways I lost some from the stress lol but other than that no bread, no alcohol at all, cardio. My joints are much better some times they hurt but not as bad any more. I take vitamins and do work out to strengthen the muscles around my joints. Sugar and alcohol are not good for the joints I found out so I cut it out from my diet.
Before your surgery, when you did work out were you super fatigue and swell up more?
lYNDA
Thank you so much for posting your story…it gave me some hope for what I’m about to go through. Also, thank you for being so open & honest about your feelings & how truly depressed & tired you really were…sometimes I feel like people just don’t believe how much it changes you & the way you feel. So, thanks again…and good luck & continued success for you!!
Hi, Casey. How did your surgery go? And yes, I feel like transparency in everything we do is the way to go. It helps you stay grounded, stay “real,” and it helps people, even if it is a little scary at first!
Thank you for sharing this about yourself. I just had my first appointment with an endocrinologist and his top guess of my condition is cushings. I was wondering if you could remember and describe other symptoms you were having beside weight gain. Also, what was the procedure like that got rid of this disease? Curious, worried, and anxious but also feeling like there is hope.
Thanks,
Nicola
Nicola,
I had tons of symptoms. Periods that didn’t stop, open sores on my arms that had no explainable cause, cluster migraines, depression, anxiety, muscle fatigue, buffalo hump, limp/oily hair, bad adult-onset acne, excessive sweating, muscle aches (couldn’t even walk up a flight of stairs). It was absolutely awful but I was so glad to get a diagnosis and know there was something causing my symptoms and it wasn’t my fault. Good luck!
You look great… Congrats to u! I have been suffering from Cushons for 3 years now… My surgery is coming up May 7… Nervous but also very excited….. Would like to get my self back to normal….
Congrats! And good luck! Where are you having your surgery? The biggest thing I have learned is to have patience and to do whatever it takes to fight this disease. Also, be sure that doctors check your bedside blood cortisol levels post-surgery. If they’re too high, it’s the first sign that you will have a recurrence. They didn’t check mine after my first surgery and I ended up having another. Fight for yourself and your health!
I live in Southern Calif. My daughter has been sick for about 4 years. She has all the clinical signs of cushings. Gained lots of weight her doctor put her on Ketekoze (spelling) Adrenal glands showed possible cyst. Her doctor wants to wait 3 months to do another scan on her adrenals. Her pituatary looked OK. Is adrenal surgery risky? Ive read alot on line. What doctor did you all go to?
for surgery? Has anyone tryed to control cushings with drugs only?
LC
She definitely needs to get checked out and fight, fight, fight. I cannot stress the fight enough. So many doctors will try to write it off because it’s “rare” and people accept it. Tell your daughter to not be that girl. If she’s sick, something is wrong, and demand the testing required to either diagnose or COMPLETELY rule it out (not just the UFC).
My daughter has suspected cushiness, she is sixteen, help !, know very little.
Angela, please email me at cushieworld@gmail.com
Thankyou Rachael
Has anyone been treated with cortisol blocking drugs and lost weight? She has been tested. Her cortisol was high but dexotomethsone brought in down and he took her off and it stablized with Ketakoze. Showed on low end of cortisol after that? MRI showed no tumors or enlargement. What doctor is good on Los Angeles area? I read UCLA has a pituatry center.But no reviews from anyone
LC
It really is so much help to be able to read your story and see your journey through this terrible disease. I’m almost 19 myself, and on my way to camp cushie at Seattle next week. From the way it looks, I’ve had this since I was 7, but have only caught the attention of doctors within the past couple of years. You give me so much inspiration and hope that I might get the chance to see what the real me is supposed to look and feel like. I’m at 295 right now. I can’t wait for the day when dieting and exercise can actually accomplish something in my life! 😀
Hey Angela! Thank you for your kind words. When I first started this blog, it was for my own sanity so that I could write everything down and figure out what I was going through. Now, it’s bigger than me and I’m so glad that my experiences can help raise awareness but also help and encourage those that are walking through the same fire. Good luck at Camp Cushie – if you need any advice, tips, encouragement, let me know. I went to Camp Cushie, too. The nurses are so wonderful. Do you know which nurse practitioner you have? I have Kelley and adore her! Email me if you’d like at cushieworld at gmail dot com.
Rachel
How are you doing now? Thanks for the information .I’m all over the place cause I’m reading different parts of your blog? Has anyone had experience with adrenalectomy?
What I would like to see is the results down the line like a year or 2 later. I.m not sure if I posted this in the right place.
LC
I have not had an adrenalectomy (nicknamed BLA) but almost every Cushie ends up getting one. Those that I know that have had one have lost all of their Cushing’s weight and then some and have their lives back. One is probably in my future.
Hello
Sorry everyone I realized there is another LC. I will use my first name for now on. I left the comment today May 12,2013.
Thanks Lynda
Rachel
What is going on with your health? Are you feeling bad?My daughter will be starting a new drug. Kormlyn I will let you all know how it goes. My daughter said she hesitates about adrenalectomy because you can get addisons disease. Whhhhheee its waring
Lynda
My thoughts on adrenalectomy are that anything is better than Cushing’s. I have secondary adrenal insufficiency right now and it’s manageable with medicine. I still live a mostly normal life. The good days outweigh the bad by far. I’m doing okay for the most part but the MRI did pick up a possible recurrent tumor so I’m preparing for the third round. It has always been “possible tumor” and never clear on the MRI, so I know what that means.
Thank you for your quick reply. Keep us all informed on how you are doing
Lynda
Hi. Your beautiful. Thank you for having the courage to post your pictures! I have been suffering through mirror image of Cushings. It started in my 30’s. I just turned 40 and am know finding information about this disease. I never had acne nor boils until my 30’s. My skin is scarred from the acne. Worst is my depression and chronic fatigue. I am know going to get tested. Your inspired me to know that there is a resolution to this and its not all in my mind. God bless you and your family! Marilee in Phoenix, AZ.
Hi, Marilee! How are you fairing now? Any news to share? I’m glad you are getting help. We’re all in this together!!
.OMG we have been trying to help our daughter for years. She is now 16 and she is shaped just like you before your surgery. We have just seen our endocrinologist and she had a ton of lab work. Im in the health field and was doing research on hormones and came across Cushing’s and it fits. She had a ultra sound no results are back yet and her lab work wont be done for 1 more week. Problem is we are loosing our good insurance in a few weeks should I push to get her into MAYO health. She has had terrible acne, oily hair moon face round belly stretch marks on belly and arms, hair growth every where, weight spinning out of control never had a period, and hypertension. She has had serious fever of unknown origins several times and she gets sick so easy. She also has rickets and asthma so she has been on steroids @ times when she gets very ill. One time the steroids put her in the hospital. Should I push to get her into MAYO right away before we loose our insurance?
Yes, get her checked in somewhere while you can. I will say, though, that Mayo doesn’t have the best reputation with Cushing’s patients. I’ve never been so I can’t speak personally to it. In any event, get her help as soon as you can.
Get on line and google pituitary centers, I found one at UCLA. I dont know what area you live in but if you look up pituitary centers make an appointment they take you more seriously.
Lynda
Thank you for sharing your story. I have had the symptoms for about 12 years or longer. I dont exactly remember life with out these symptoms. I found this disease by doing research and asked my doctor about it and he is pretty sure I have it but I get tested this week. My husband and I are super scared but I hope I do have it so I can get the help I have been needing. This disease has cost me one marriage and almost another. My husband is finally starting to understand that its not my fault. I am tired of hurting and I am tired of everything else. How long did it take you to have your surgery after you were diagnosed? Do you hace any advice for me.
Hi, Laura. I was lucky in that I had no idea how sick I was, and I lucked up on an endocrinologist that knew what I had immediately when she saw me. She diagnosed me officially within a week of our first meeting, and I had my first surgery three months to the day after my diagnosis. So it was very fast for me, but that’s the exception, not the rule. That’s why I’m out here, yelling and screaming about it and trying to get doctors to understand. To raise awareness. I know you’re feelings all too well, and I know how much it hurts to lose those you love because they just don’t understand. My heart breaks for you because I’ve been there. All you can do is focus on the big picture. You’re going through this now, yes, but there IS a light, and this hurt and pain and strife is serving as the impetus for your life to be MORE. It’s all in your attitude. I know it is hard to have a positive attitude, but trust me when I say, this is for SOMETHING great. You’ll realize what that “great” thing was one day. Stay strong, don’t stop with rejection. Just keeping finding ways to get around the roadblocks. FIGHT, FIGHT, FIGHT.
Go girl your an inspection. I love you!!
I do agree with all the concepts you’ve presented on your post. They are very convincing and will definitely work. Nonetheless, the posts are very brief for newbies. May you please prolong them a bit from next time? Thank you for the post.
I just want say congrats you look great and thank yous for giving so much feed back, I have trying to do so much research on cushing, I was diagnosed with this about 20 to 30 yrs ago but nothing ever done. I have been getting worse from this diease and hopefully thay are a lot of differnt dr working with me now. I have all the features,diets tou name it nothing wrks for me sometimes I get so embarssed I look like I am prego. Thanks for a lot for sharing ur info. Take care and the best to you. I would to hear from you… debbie wills!
I am doing the 24 hour urine test now and will take it to my endocrinologist in the morning. I am really scared, as I don’t want to have this disease, I am also praying that I do because I just want to be fixed. I have many of the symptoms and I’ve gone to my GP for over a year about them and my Endo for 4 months. I have cried to both of them telling them that my marriage is ending because of this but there wasn’t any concern. Right now I’m at a friend house because my husband asked me to leave and go find a job and get on my own feet. I’m trying so hard, I get a shower and don’t have the energy to put makeup on or dry my hair. Anyways, when I do my makeup just sweats off of me and my hair either is sweaty or gets greasy immediately. I am so desperate right now.
Misty, how are things? Any updates? Has the endo figured out anything?
Honey, I too, suffer with Cushings Disease. I have tried every diet I can stand, I have been called the Diet Queen, still no sucess. I have never been a heavy person. I am so ashamed. Some times I don”t even want to leave home. I am a very happy person, looks like you are too. May you find your gold ring. LVA in Ala
Thank you for sharing your pics and progress. I have had two pituitary tumors removed, the latest was in 2007. Still have weight issues, but working on it. It really enlightens me to read you story. Gives me hope. Will keep thinking of you and know you will continue to fight the battle, as all of us “cushies” do…Best of luck.
Thank you so much, Linda! Keep up the good work and keep your faith! Love, Rachel
Does anyone know if u can get pregnant or carry a baby???? All this is a lot to take in n greatful for all of u!! But if I can’t give my husband a baby it will break my heart more then anything
You can. If your Cushing’s is only caused by steroid shots and not by a pituitary tumor, you should be okay once you remove the high cortisol levels. If you do have a pituitary tumor and have Cushing’s Disease, and disturb the pituitary function, it may be difficult. I do not have any pituitary function since most of my pituitary was removed, but I’m actually okay with not having a baby. I can adopt, I can foster. I can still be a mom. It was more important to me to be healthy than not.
Thank you for sharing…you’re beautiful! I am now being tested for Cushings after years of weight gain and agonizing pain. I am feeling hopeful now that I may be cured.
Jojo! Thanks for the comment. Hos is everything going? What were the test results?
need someone out there who developed symptoms post pregnancy. my daughter has many symptoms and no doctor has taken her seriously -just call it baby weight. lives in raleigh north carolina-any doctor suggestions.
Eileen, TONS of us have symptoms post pregnancy. Many people have developed Cushing’s during and after pregnancy, as well as other pituitary issues that required surgery on down the road. Doctors never take it seriously and always overlook it. Get her to a pituitary specialist. UVA has a great program, so does Vanderbilt in Nashville. I also went to Swedish Neuroscience in Seattle and they were great. You must do the fighting, because finding a doctor that actually doctors with this is rare.
I also have had cushings and my surgery was june 2008 I had my surgery then it came back in 2012 where I had another surgery to remove the tumor.
Jodie, how are you doing since your second surgery? – Rachel
Thank You so much for sharing !!! I am so happy for You !!! I used to be 125 lbs and active usually ate healthy except for Friday nights w my Daughter. All of a sudden my breast started getting bigger, then a few months after that I started gaining weight in my mid section and it hasn’t stopped. I was even taking diet pills prescribed by the Dr and working out, no weight loss !!! I eat healthy when I do eat still on Friday nights we have our pizza .I am now 190 lbs and so upset with how I look !!!! 😥 I am going to talk with my Dr. about Cushing’s disease. I only have the weight gain symptom as if yet .xoxo !!!♥
Thank You so much for sharing !!! I am so happy for You !!! I used to be 125 lbs and active usually ate healthy except for Friday nights w my Daughter. All of a sudden my breast started getting bigger, then a few months after that I started gaining weight in my mid section and it hasn’t stopped. I was even taking diet pills prescribed by the Dr and working out, no weight loss !!! I eat healthy when I do eat still on Friday nights we have our pizza .I am now 190 lbs and so upset with how I look !!!! 😥 I am going to talk with my Dr. about Cushing’s disease. I only have the weight gain symptom as if yet .xoxo !!!♥PS. You are BEAUTIFUL !!!
Julianne, thanks for sharing your struggle. Have you been to an endocrinologist? Never dismiss it as “just” weight gain. You know when something is wrong, so FIGHT! Put your boxing gloves on and step into the ring. We’re all in your corner. Thanks for your post! I look forward to hearing about your progress! – Rachel
Hi there-man do I feel your pain! I was diagnosed with Cushing’s Syndrome in 1993 after months of seeing specialists. I was 23 at the time. Even though i was told I was told I may never get pregnant I happily had a beautiful and healthy daughter in 1997 and haven’t looked back.
Cambria, this gives me hope for my struggle with infertility. I so want a baby! No man, though, so may have to go about it on my own, but that’s okay! – Rachel
I also was blessed to find a young Endocrinologist who knew upon first sight what I had. Granted this was after months of allergy tests but what a relief!! I had the adrenalectomy and it was rough for a little while but a few months down the road and I was well on my way back to normal!! Best wishes to all who suffer this cruel disease.
Thanks Cambria! And what a beautiful name! – Rachel
Rachel, I have a learning disabled daughter who has been struggling with weight gain from the age of ten. and I have been fighting with her Dr. for what seems like forever now, So I finally got pissed and changed her Dr. With just the first visit he felt lumps in her neck, sides, and stomach. And noticed hair growing from her belly button down to the top of her private area. So the next ? he asked me was. Does she grow a beard like facial beard? And I thought oh my God how did he guess that. Well turns out he didn’t just guess it. He said he is all most certain that she has Cushing’s Disease. I always thought the worst day of my life was when the doctors told me 18 years ago that my baby girl was board line mental retardation. But I was wrong I found that was easy compared to this. I am so scared of what the out come of these lab test are going to reveal. They say that when life hands u lemons, u make lemonade. Well I’m really getting tired of drinking lemonade. LOL!!!!!!!!!!!!! Just so afraid for my baby girl cause she just doesn’t camphene all this. I guess the good thing is she has such a sweet and loving out look on life. So good willing that will help her get through this. Thanks for allowing me to unload on u .And I hope u are doing well . Patty
Patty – how is your daughter doing? Has there been any update? What did the lab tests reveal? Hang in there. You are strong and your daughter’s wonderful outlook will help her through this. That is half the battle and she sounds like she already had that in the can. Maybe this is a blessing in disguise. I don’t know about your spiritual beliefs, but if you will allow me to impart this. God/Energy/Light/Mother or whoever you choose to believe in, has a plan for our earthly lives. Everything that happens is to prepare us for that plan. So take all of this as a blessing if you can. It helps to think of it in that light. Instead of “whhhyyyyy am I and my daughter going through this?” think “Okay. Alright. We’ve got this. Thanks, God, for this struggle and I cannot WAIT to see the blessing you have in store.” Because on the other side of every struggle is a HUGE blessing. Be strong. – Rachel
2012 i was about 135lbs at the age of 17 years old i had ended up getting pregnant and having problems in my pregnancy were my child organs were outside of his/her body and there was no way that he/she say she was going to live so i was force to either go through the pregnancy and my child come out and not live or terminate it ….i then had a shot done to stop the baby heart beat and then was rushed to the hospital to have it like a regular pregnancy were i had to get a epidural and after that i got on the birth control shot and since then my body has been going through a major change this all happened in october of 2012 and december of 2012 thats when i started to notice weight gain stretchs marks headaches fatigue etc..i started going to doctor and they started doing blood work and urine test ultrasounds MRI everything came back normal except my acth levels and the doctor diagnosis me with cushing syndrome but for awhile i was little worried because from the MRI there was no growth so i decided to get a second opinion and basically was told the same thing then i was schedule for more blood work then a petrosal sinus sampling which showed that something is going on the right side of my pituitary gland so I’m scheduled for my last MRI/CT scan to see if they can find a tumor which would be best because thats all they will have to remove but if not regardless in august I’m schedule to get the removal of the right side of pituitary gland out I’m kind of nervous but excited that hopefully this is the cure for my fatigue, brittle bones, buffalo hump, high blood pressure, pre diabetic, stretch marks, no periods, low sex drive and weight gain I’m now currently 216lbs at the age of 19 years old
Hi Rachael , Im in the fight for doctors to believe me 2 years of being told im just fat.I feel isolated I havent taken a picture of myself in 2 years and it seminars to be getting worse I feel like no one believes me, now the pressure on face is out of control.Can you tell me the best way to prove this as doctors just think important obese.
Hi, Samantha. Can you email me at cushieworld at gmail dot com? I understand the despair and isolation that comes with this disease and with doctors not believing you when you tell them. I can give you some advice that will hopefully lead you in the right direction so please email me and we will go from there! Rachel
I’m right there with you .. Have been going thru so many testing since late Feb 2014 .
You name it I got tested .. Now late sept my hematologist tells me I need to lose weight and that’s why in so tired . I was like u have not once told me that since I have been seeing him since Feb.. My encronlgist now finally orders a cortisol test .. So hopefully I get some answers.. The symptoms I have are greasy hair , founded face, hump behind neck, streak purple marks on my stomach.. Always getting fungus infections on my toes.. Well wish me luck ! And I wish you all the best also .
Hi Rachael, its Samantha
EACH PERSON ON THIS PAGE — PICS OR NO PICS — YOU ARE ALL SOME OF THE MOST BEAUTIFUL HUMAN BEINGS I HAVE EVER HAD THE PLEASURE TO READ COMMENTS FROM —- PLEASE HANG IN THERE —- I AM A 44 YEAR OLD PRETTY HEALTHY MALE WHO IS INCREDIBLE HAPPY IN LIFE, MARRIAGE, EVERYTHING ALL AROUND —- THE PAIN MAY TRY TO GET MY, THE WEIGHT MAY TRY TO KEEP ME DOWN, BUT MY WILL POWER IS BEYOND MEASURE —- NOBODY AND NOTHING WILL GET IN THE WAY OF MY DESIRE. YOU GOOD LADIES PLEASE KEEP UP YOUR POSITIVE ATTITUDES — PRINT THIS COMMENT FROM ME — READ IT DAILY — PLEASE NEVER GIVE UP —- THIS IS ALL PART OF A BIGGER TEST — I ASSURE YOU — I AM THE WORLD’S MOST IMPATIENT PERSON, BUT I HAVE LEARNED TO BE THE MOST PATIENT PERSON NOW. NEVER EVER EVER GIVE UP. USE YOUR KNOWLEDGE, STRENGTH, AND EVERY ONCE OF WILLPOWER TO COMMUNICATE POLITELY WITH YOUR DOCS, EVENTUALLY THE RIGHT ONE WILL RESPOND. DO NOT FIGHT THE IGNORANT, JUST MOVE ON, NOT WORTH TEACHING THE IGNORANT DOCS SOMETHING THEY WILL NEVER LEARN. MUCH LOVE TO ALL OF YOU!!!
Hi, my name is Patti. I am just beginning to deal with this condition. My doctors ignored me for about two years and kind of blamed me almost. Two days ago, they sent me a letter in the mail (can you imagine being treated this callously!) to say they showed my tests to an Endocrinologist who is concerned that I have Cushings, and come in to do diagnostic procedures. I didn’t even know what it was until I got online. I am very scared, and looking for info and support. My doctors are thru the V.A. ( am an Army veteran), and I don’t trust my doctors since they ignored me this long and get so sick. Any ideas for getting myself informed or fir support would be so appreciated. Patti.blue57@gmail.com
P.s. you are an angel for posting this, so appreciate that you made this page!
Thank you, Patti! I’m sorry – I’m just now catching up on comments. Where are you in the diagnosis process? How are the doctors in the VA going? Feel free to email me at cushieworld@gmail.com with any questions you have.
My name is Maureen Mohabir. I live in Guyana,South America. I was diagnosed with cushings syndrome in 2006. In 2007 I had my adrenal gland removed. However,in my country we do not have an endocronologist neither does it have the technology to do the testing and treatment. After doing research on the internet i was amazaded to learn that i have a recurrence of the disease after suffering and struggling with other signs and symtomps. Please help me.
Maureen, please email me at cushieworld@gmail.com.
Hi Rachel.
I have been reading all the comments on your blog. I too, have been diagnosed with Cushing syndrome. I complained to my doctor for about ten years. He just kept brushing me off with my concerns. It all started with me being hot all the time (2005). I would be outside in the middle of winter with your breath showing, snow on the ground and would be in shorts, a t-shirt and flip flops. Then I started getting more symptoms over the years. Constant headaches, bruising, not healing properly and taking a long time to heal, acne, skin tags, irregular periods, high blood pressure, water retention, weight gain, moon face, buffalo hump, vision problems, facial hair, purple stretch marks, spider veins, extra fat deposits on the upper part of my back and neck. My doctor told me that I was going through menopause but in November I started having a hard time breathing. I finally pushed and he finally sent me to an Endocrinologist in January of 2016 and they did a battery of tests and determined that I have Cushing syndrome. An MRI failed to show the tumor in the pituitary gland and I have to go have the final test done to find out if this tumor is in my brain or somewhere else in my body. Feel like no one understands what I am going through. I just want this to be confirmed so I can finally get on with my life. I know that after surgery, it will be a struggle to try and lose the weight but hope to have my life back. Everything has been put on hold. Tara
Tara, how are you doing? Did they find the tumor? Did you have surgery?
You look amazing. I’m so happy to see the dramatic changes in ALL of you. I on the other hand am a 2x’s breast cancer survivor. (SURVIVOR) Thank the Lord! During my second BC my radiologist during radiation found a mass on my adrenal gland in which they removed, yet has reappeared detected as of 6/21/2016. I’m sure it will have to be removed due to the hormonal side affects, weight gain, swelling and all the other negitive side affects. Swelling in my abdomen, skin disorders and dicoloration of my face, not to mention all the others. I’m to the point in life where I need to make a stand and have as many tests possible. Once again I’m so happy to see and read your inspiring story. May the future bring you more and more blessings.
im studying thi in school and wanted to see pictures if this is what Cushings look like you got the cute version you go girl you look great
Hi Rachel
Thank you for your reply. Yes I did have surgery at the end of January and they did find a Tumor. The results came back with suspected Cushing. I am on the road to recovery and will have to have further testing to see if they got it all
Hi Rachel
Just wanted to give you an update. Looks like they didn’t get the whole Tumor. Have to get more testing to confirm. Should have that all done in two weeks and will know more then. Options after that will depend but if it is still there I might have to get another surgery to try again, radiation or removal of my adrenal glands. I tell you this has been a long and drawn out process. Just when I think everything will start to return to normal, I get thrown a curve ball.
I again Rachel
Me again. So they didn’t get the whole Tumor and my dr put me on some medication to suppress it. Let me tell you it took a toll on my system. Went through cortisol withdrawal. He finally put me on some steroids and I am feeling great. I haven’t felt this good in probably ten years. I believe they are going to control it this way until something shows up on my MRI. Hope all is well with you. Take care
I’ve been dealing with Cushing disease for 19 years now. Had my first surgery in 99.In 2005 the tumor came back. I had gamma knife now here it is 2018 found out in 2017 my tumor is back! Not a candidate for surgery or gamma knife supposed to see about doing a clinical study in the fall on a new medication to see if it will help control my cortisol levels. I guess only time will tell.