Cushing Disease

Hello Ace

I know this is overwhelming for you. I am the first person who was diagnosed with "cyclic" cushings in the U.S. in 1989. I was 38 when i was diagnosed and it took them 9 years to diagnose me.i had 23 doctors at the time. I was really a small person i weighed 89 lbs when i graduated high school. My feet quit growing at age 11. I went from 105 lbs tp 276 lbs in a 6 month period. I hzd the classic "moon" face, buffalo hump, and numerous symptoms: sweating profusely, extreme fatigue, horrendous mood swings. I named them..jeckle and hyde. Jeckle was manic and rarely slept much, overly active on warped speed, positive and talked non stop, Hyde was depressed, needed to sleep excessive where id sleep for 3 days, moody, negative and i did not want to talk at all. In 1989 they placed me in the ICU and tested me with some special medication for a week, drawing blood out of me like every 5 to 10 mins. They watched my personality change, my appetite, it was very eye opening for them. I know you have lots of symptoms and are concerned about the upcoming surgery which is normal, but believe me out of ALL the surgeries ive had, this is the easiest one. I have had 2 pituitary surgeries, one in 1989 and another one in 2016. I want you to be sure to have a MRI every year, this is very important. You are young, healthy and active. I expect once the tumor is removed you will lose the weight and return to your normal body. I was not that lucky as it took too long to get diagnosed and im still battling this disease. This forum and the Cushings Support and Research

Foundation is something to look up and become involved with, it is a quarterly newsletter that has lots of information. This helped me some as i was the only person in washington state that had this disease and i too had no one to talk to. This is a rare condition and you are seeing here the survivors and those going thru this same situation. You are not alone. The hair falling out is part of the symptoms, the fatigue also. I had like 45 symptoms, not one of us is the same. Just know you will get well and your future will be fine. So believe me im a twenty eight year survivor of this disease. If you have anymore questions be sure to post them, you will receive replies from this forum, im just one. Take care.

Hi.  So glad you have contacted us.  I had all the symptoms that you have but I didn't tell my GP the 2 most important ones until after I had watched a Doc Martin programme!  That was excessive hairiness and excessive sweating, as soon as I told my GP that I was tested for Cushings.  At the time my weight had gone mad and my waist went from 26 to 45".  It doesn't matter what you eat before the op as it all goes straight to fat.  I am not sure about the tummy bit although I have recently been diagnosed with Diverticular Disease.  BUSCOPAN is very good for stomach cramps, can be bought over the counter but you probably should check with your GP.

As to the operation itself, when I started this forum I promised myself that I would always be truthful.  I was told before my op that 2 days after the op I would feel more awful than I had ever done before and I did.  it is like "coming down" off drugs I guess.  Your body has been flooded with Cortisol and now suddenly that has been taken away.  It is bad but you must remember that you will be on your way to feeling better, losing that weight , feeler more awake etc.  None of us Cushy's are the same but most people find the op the same.  Just think you are on your way after all those years of tests and feeling rubbish.  One of the Forum are usually here to answer you or just chat but we all do this at different times of the day.

We have been trying to make a list of Endocrinologists we know to help others.  Where are you based?  Take care and chin up.

Heeeeyy

I’m in the UK, based down South in Sussex. 

I have steroid related Cushing’s (Cushing’s syndrome). I can relate to all the symptoms, they’re awful. I’ve gained 2 stone in 2 months, have a huge humpback, face is super swollen & round, I’ve grown a facial beard yet my hair on my head is falling out, my belly looks like I’m 8 months pregnant, I’m always sweating (I battle my parents as they want the heating on & km sat there in vest & shorts melting!), I’m exhausted all the time, hyper then down, wake up at 4am then nod off around 7 just in time to get up with my kids 🙄 I’ve also got diabetes cos of this & ive been hospitalised twice the last month with tachycardia & high BP! I saw an endocrinologist on Thursday who’s running tests on my pituitary & adrenal glands to make sure the Cushing’s isn’t stemming from there but I’ve been on steroids since April for crohns so more than likely that’s the cause. 

I can’t comment on the stomach issues as I have crohns so constantly have issues but don’t think that’s Cushing’s related... 

I’m 38, a single mum of two wonderful girls (11 & 2) and I hate this disease. I have days where i get on with it then days like today where I stick on Barney on my bedroom tv & Put baby in with me so I can rest whilst she watches tv as just don’t have the energy to function (plus I’ve also managed to get inflammation in my jaw so my ear & jaw is in absolute agony right now!)  But us Cushies  are tough, we’re a good group on here & are always here to listen to each other rant.  Good luck with the surgery & if you need to rant you know where we are ????

Hi ace0310. Finally ur months of testing have ur diagnosis. That’s postivie, now surgery, ring the secretaries an see can they tell u how long u will wait etc, tell them u will take cancellation appointments (that if u can). I feel ur pain, I’ve cyclical Cushing’s An have been tested for months (since jan) because they could not find a source so apparently I was rarer again. an only a month ago did they figure it out, mine is inside my adrenals. So no wonder scans wernt showin it. 

Unfort I’m at the stage where I’m so tired (from doin nothin), I use to go gym like urself, but my muscles are so weak (climbing stairs hurts, I can’t bunker down An get back up at all, walkin short distances is enough) my bones hurt to, especially my back. That why I can’t even go for walks. I’ve went from size 10/12 till 20. I don’t have an appetite An when I eat it very little An I feel I’m gonna burst. I’ve sweatin, more facial hair An body, losin hair on head tho. Thin skin. Swollen ankles/legs. High blood pressure. Palpations. Moon face! Stretch marks.  My advice is if ur fit for gym do go, but u may find it become difficult so b careful as u might cause more damage. 

Mood bes up An down. Is it any wonder we b feelin low with it when are bodies physically change in a horrible way, An wer unrecognisable An doin the simple tasks is impossible. I’m currently off work as I’m not able, I’m a nurse. Miss it so badly!

As much as it horrible u have to keep chin up! Don’t let it defeat u. I have to admit yes I have days wer I’m so frustrated An p****d off an u don’t see ur self gettin anywhere but it not true. Things could b a lot worse. An I tell myself that every day, I be grateful An thankful for wee things. I know it sounds stupid but really has got me thru. I don’t let it get me down as much as it probably could. Because we can defeat it. We jus need the treatment! But we will get there. Ur still same person on the inside! An u will go back to the way u were when Cushing’s is gone (that what my endo told me). I can’t wait for that day. Haha. An it will take time! Sorry for essay. But if u any questions I’m happy to help. It a s**t disease but remember u Wil beat it, An b stronger for it. 💪🏻??

Gastrointestinal problems are common in all kinds of Cushings ask mister google lol I doubt is food dependent cause of prolactin thing but then again who knows the human body is very strange x least your diagnosed I've had 7 years of crap and only now am I getting sent to a specialised centre for answers ! I used to be a decent looking woman before this now I just look like a pregnant blob x all the best x