Cushing Disease

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Hi Everyone, 

First ever time I have ever done this, so if its rubbish then I apologise way in advance. I have recently been diagnosed with Cushing Disease after months and months of tests caused by a tumour in my pituitary gland and waiting for a phone call to discuss when I shall be having surgery, They originally said it was something called "prolactinoma" but then after explaining all my typical Cushing symptoms I was tested for that with all results coming back positive, although I still have high prolactin too which is causing other things such as milk discharge, no periods etc. 

I am 25 years of age and have not met anyone or spoke to anyone who has this condition, I was just looking for advise on what to expect in regards to surgery and how people are coping with the symptoms. I have the big round moon face, I am rapidly putting on weight, I'm an avid gym goer and gone from an athletic size 10 to a chubby 14 with all the weight distrebuted to my stomach and boobs in a matter of a month. My eating hasn't changed and I've still been keeping up the gym although I'm starting to feel tired all the time and aching. My sex drive has completely diminished, I'm depressed struggling to get out of the house. My hair is getting fine and falling out, and I'm starting to get hair on my face. Is anyone else experience these? 

Another question I am looking to see whether is related to this condition is stomach problems? I have enquired about this but nothing online seems to show a connection, I have been experiencing serious abdominal cramps overtime I eat and sometimes drink, to the point I just don't want to eat anymore to avoid the pain. i have found something called "food dependant" Cushing but I'm not sure. 

Thanks in advance!

any advise on how to manage with this would be grateful, I am usually a very happy go lucky girl with a lot of energy. Now I feel depressed, miserable and weak this condition has really took its toll on me. 

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  • Posted

    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.

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    • Posted

      Thank you for your reply, I'm sorry to hear what you have been through I can't imagine what its like. I have been luckily compared to those stories I have read about how long people have had to wait for a diagnosis. Mine has been just over a year and I'm struggling with lack of patience to get it solved. 

      I very much have my own Jeckle and Hyde, however a lot more Hyde. I've also just recently started a new job as a police constable and the training is very intense, I'm struggling to sometimes even get out of bed and I can't afford to not be at work. I think we've all this added pressure its becoming so much and without reading some of these stories I'd have felt even more in the dark and alone then I already do! 

      I shall hopefully have some answers this week! 

       

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  • Posted

    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.

     

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    • Posted

      Hi Vicky, 

      Thanks for your response, I also sweat a lot I wasn't aware this was part of it too least I know I'm not going crazy! I have heard that 2 days post op is suppose to be the worst part, however I don't mind if it cures all these symptoms as I am literally beyond breaking point with it. 

      I am currently living in Birmingham, UK. However my Endo is based in Nottingham, UK as thats where I used to live at the time of being diagnosed so I havent transferred doctors etc as I was told it would only delay things further and I'd rather get the operation out the way etc and travel then have to go through all this again! 

       

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  • Posted

    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 ????

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    • Posted

      Hey 

      Thank you for taking the time to read my entry and reply! Sorry to hear what you are going through also! to say I can relate is a under statement I can't imagine how you deal with all this and children to SUPERSTAR! I am just about managing to juggle this with starting a new job as a police officer. Luckily all the exams etc are distracting me from my huge face and ever growing stomach... 

      I'm at the point now where I'm struggling to make the gym because my energy levels are so low albeit I am still going as I can't imagine how big I would be if I didn't at least attempt to go (although whats the point when you gain weight anyway?). I feel like just eating junk as the weight gain is inevitable anyway, and some days I feel so depressed I don't even want to leave my room. its seriously affecting my quality of life and my relationship not only with my partner but family and friends too, I guess no one truly understands unless they have been through it - hence why I thought writing on here and talking to people like yourself would help! 

      Good look in finding out the results from your glands, I had an MRI which came back with a macrodoma (large tumour) on my pituitary gland, they had a meeting Wednesday but I don't know how long I'm expected to wait for a phone call/ letter ?? 

       

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    • Posted

      I wouldn’t have thought too long, generally if they find something they deal with it pretty quickly. 

      They’ve done a blood test to check my pituitary & I’m awaiting a cat scan on adrenals. It does totally suck this weight gain & physical appearance. My eldest is at the age where she’s embarrassed by me & I really feel for her as I know how horrid I look so I don’t really leave the house & she won’t have friends over or anything. She asked me last night if I was gonna stay this way for ever, broke my heart. 

      I don’t know how you’re managing the gym, just climbing stairs sends my heart rate to dangerous levels lol, was admitted 2 wks ago cos pulse was so high I was at risk of stroke! Now got me on meds to try & slow it down & meds to level my sugar levels. Gym is totally out the equation for me lol! 

      I get the whole eating thing, today I ate a bunch of crap, know it’s not healthy especially with my crohns but really couldn’t be arsed today, especially with my jaw & ear hurting soooo bad. Hopefully this week you’ll get a call from Drs, if not then I’d probably call them as I’m inpatient 😃😃

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  • Posted

    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. 💪🏻??

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    • Posted

      Hi Coc87 

      Sorry to hear you are going through all these symptoms too I can only offer empathy I know exactly what you are going through and it is horrible! I have called the endo today and waiting for a call back, I need a note from them too say I am fit to do my self defence training. Albeit I know I'm weak and will struggle I need to at least try do it before I eventually go off leave with this op! 

      I am noticing that the gym is becoming more and more difficult as the days go by, I'm getting very short of breath and getting a really fast heart beat by the simplest of tasks like walking up the stairs - I'm assuming this is a normal Cushing disease symptom? My boobs have drastically gone up in size too do you know if this is normal ( sorry for all the questions!) 

      I'm hoping as soon as I have my operation asap things will start to alter and go back to normal, I've had no period for over a year I'm gaining weight with a moon face and Im getting weaker as the days go by. Depression is the worst fighting with yourself, some days I don't even want to leave the house and its taking a massive hit on my social life. I am forcing myself out the house and forcing myself to the gym and eat healthy foods, when really you think whats the point when you will gain weight anyway?? ha! 

      fingers crossed I hear something soon! 

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    • Posted

      Gud luck with ur defence training. Just b careful if u are feeling weaker. Some Cushing patients can break bones easily too. But hopefully u will b grand. Yea short of breath doing the stairs is normal. My endo doctor monitors my weakness by makin me squat an get back up. That doesn’t happen anymore because I can’t do it. Yes fast heart rate is another symptom, palpations. It horrible. I’m on bisoprol (if that how it spelt haha) to help. An it normally does. Boobs gettin bigger is another. An fat deposits on my back  round the bra area. Totally outta proportion. I’ve had no periods also. The depression is the worst. I hate what I see in the mirror, An then cause of weight gain an weakness An tiredness it hard to do simple tasks that I wana do. U do need to force urself outa the house though! It just has to be done! So keep doing it because u could get ur self really low An never leave. Just keep knowin this is temporary! U will get there! I know what u mean about the eating too haha, but so keep eating healthy an treat ur self too. But the healthy u are goin for surgery, that will stand in ur favour too! Keep the head up. An so let us know how u get on. Remember too all Cushing patients are different in their symptoms an recovery, an that just life in general, were all different! But we can learn from each other! 
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    • Posted

      HI,  It is quite normal for you to gain weight all over including your boobs and back area.  You will feel better after the op.  Keep going, down let Cushings change your life plan.  You have all my admiration to persist in achieving your goals.
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  • Posted

    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 

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    • Posted

      Thank you for your reply, I have serious stomach problems there isn't a day that goes by where my stomach doesn't cramp up - if I don't eat or drink anything I'm fine! I've had numerous tests for all sorts of related stomach problems before the Cushing diagnosis so I am hoping that the problem is related to Cushing and will go away when I have surgery!

      I hope you get sorted soon, I'm sure you look fine but I completely understand where you are coming from. Cushing completely changes the person you are mentally and physically, your appearance changes and theres nothing you can do about it. Keep your head up! thats all we can do is stay positive!!  

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  • Posted

    Im crying typing this post because i just discovered it. Its like a good book you dont want to out down. Im just 3 months from having my surgery for pituitary. I had acth and prolactin tumor. All the things your feeling, especially the stomach, is all a part of cuahings. Before surgery i felt like i was suffocating. Gerd was constant and i got full fast. This all went away after surgery. In fact, all the symptoms prior to surgery are going away. Im just now seeing the old me show herself in the mirror. So exciting. I have new aches and pains but hope its temporary as i heal. Hope you have a good support system at home. That is what has gotten me through some of this. Aromatherapy, zen music, and heating pad were very comforting after surgery. Will be looking for more post from you and helping you along the way.
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    • Posted

      Hi!

      I'm happy to hear you are on the road for recovery, your symptoms sound exactly the same as mine! I can't eat or drink any large meals I have to have small amounts of food little and often to keep me going otherwise I'm in pain for hours on end!!

      I'm waiting to hear back from my specialist as to when my surgery will be, I'm hoping it's soon. Do you know if it usually takes a while??

      Plus how long are you in hosp for? And the recovery period ?? Sorry for all the questions!

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