Cushing's for lifetime?!
Posted , 7 users are following.
Hi all! I'm happy that I found this group as I hope there's people who can understand me and we can share experiences with each other. Let me introduce myself. I'm 29 yrs old mum to a gorgeous 13 maths old little girl and one been diagnosed with Cushing's disease when I was 21. But my story starts when I was 18. Firstable I had an Irregular period and my weight gone up from 50kgs to 94 kgs my moon face was covered with acnes all over. I was frightened and hopeless. I managed to see and endocrinologist and he diagnosed with PCOS however my gynaecologist didn't believe me that I didn't have a chance to get pregnant and every time when I went to see him he just sent me for pregnancy test. So I gave up, I was tired of explaining myself all the time and nothing happened. But then when I started to seeing the endocrinologist I got the hope back. After years they treated me for PCOS but no improvements happened they admitted me in the hospital astaff they said I don't keep my diet and that's the reason why I'm not improving. But after weeks in hospital they've seen that I can deal with my diet but still no changes in my general condition they didn't have a guess what is going on. As I couldn't sleep at night times I've done a lot of research on the Web and found Cushing's disease so on my next appointment I asked my endocrinologist to have an MRI cause I thought I have Cushing's he agreed and sent me for urgent MRI. I was right so I got hope again however I was scared of the transphenoidal surgery. After my MRI I had am consultation with a neurosurgeon and he decided to do the op ASAP cause the macro adenoma was going to be dangerous for my optic nerve. So one had my 1st surgery when I was 21. It took about half year to get better but I've got. Even I've lost 27kgs within 4 months without any diet or exercise. I didn't even realise just one they my trousers fell off from me. Lol I was so happy. My depression is gone and I was myself again. I was taking Hydrocortisone for several years. I met my husband when I went out to celebrate my health with my friends and we've got married in 2011 then we moved to London. I had to have MRI every year for the years. They said if the scans clear for 5 years it means I'm cured. I went for my last MRI in December 2013 and was clear. I was so proud and happy. But my symptoms started again. I was pregnant in 2014 when they found the tumour grown again. I broke down. I even lost my baby at 8 wks of pregnancy. I can't tell how I was broken. Do they've done the 2nd surgery on me but they were recommend to have radiotherapy even after the surgery as the tests shown is a fast growing tumour. I asked for a 2nd opinion cause I was frightened to loose my fertility. So they decided I don't need radiotherapy. After few months of the operation I lost weight again just like a balloon. My husband didn't want to believe his eyes. Lounge a new person, I've changed a lot, no acnes, no dry hair, got generally well, no depression. After 6 months I've got pregnant again and note she is a healthy baby. As I went for DNR test as well they found out my Cushing's is not related to it so our children likely won't get this horrific disease.
It's still 2016 and my scan was good in March but I've had this feeling that something is not quiet right with me. I'm depressed, fatigue, acnes and dry hair started, can't lose my weight, hair started growing on my face, my muscles are killing me, I have Recurrent infections, Eczema, Fungal infections and my period has changed. But my new Dr saying I'm alright. But I'm not. So I asked myself back to my first draft and unfortunately she diagnosed the Cushing's again. Just before Christmas. My ACTH level is in the sky again and in waiting for my MRI very soon. To be honest this is different. I'm fatigue like never been before and struggling to concentrate and my short term memory. My family knows what's happening but they don't know what's happening inside of me. How I'm feeling or how tired I'm. Sometimes I feel like I'm just a problem for them. Is very difficult to co-op south my working life, my baby and other daily routines. I sent them a leaflet and I hope they will understand me better and accept my condition and behaviour cause even I know myself how difficult with me. I got anxious from time to time and shouting on them and breaking the staff in the house bit I'm ducting inside. I don't know how will I co-operate later after the 3rd surgery and now it's clear that I need radiotherapy. How will I looking after my daughter when I can't even stay awake and how will I co-operate at work or at home with all the houseworks???!! I just feel lost at these days until I know more. And not at least how will my husband accept the situation again? We were planning a 2nd baby and now it seems to be a dream only. Will he still see me as a woman if I lose my fertility? All our plans seem to be flyaway. I'm shocked, frightened, alone and very very fatigue. I just wanna runaway and screaming out or sleeping for days lol.
Is anyone else feel the same??? Anyone else who had the 3rd operation done?
0 likes, 20 replies
Annie2012 enci
Posted
Hi, I'm Ann and having read your post I really cannot imagine what it must be like to have this a third time.
I only had it once caused by an adrenal tumour and it turned me from a placid easygoing person to a complete monster.
It broke up my relationship, took away any confidence and has taken several years to recover mentally, although the physical aspect disappeared post-top.
Try and stay strong for your family , we can be far more resilient than we often realise and I do wish you a speedy recovery. If this nasty condition gave me anything positive, it did leave me a far better perspective on life to enjoy the smaller things and less fearful to take on new challenges .
Ann x le
cycliccushings enci
Posted
Enci
Do not give up..ok....I am a Cushings disease survivor...I've had pituitary surgery twice..once in 1989 and just recently again in may of 2016 with a reoccurring pituitary tumor...do not let them stop checking you every year. ..if I had done that my 2nd tumor would not have been as large. I am also the first person to be diagnosed with "cyclic" Cushings disease in 1989. I have found the pituitary surgery easier than most surgeries. Try to take each development in your diagnosis, surgery and radiation into the perspective that what you are going thru right now does not reflect what will be happening in lets say 2 years from now.
It is hard for family members to understand unless you have your Dr's explaining to them what is happening, what is coming up in the near future and what the long term looks like also. Cushings is a rare disease, listed on the NORD list. However, there has been major progress since 1989 in the diagnosis and in support from the survivors.
All your fears, you need to sit down with your family and your husband and honestly share what is going on with you and let them ask questions and share their fears with you also. If their are questions, ask your Dr for clarification on those. Don't be shy and ask so you know those answers, it will make this easier. I'm not sure where you live whether there are agencies you can go to to help with counseling, home care help and dealing with your everyday life, the tiredness and the work entailed with having a small child. I hope that your family will be supportive and want to help you deal with the overwhelming situation you find yourself in.
So you can see I have endured thru this illness, really since 1980...when I first got ill, it took them 9 years to diagnose me as they did not believe in cyclic cushings, until me. I was 29 years old when I got sick, i was 38 when I had the first tumor removed. I am now 65 years old. So understand you will make it through this.
Just know there are plenty of survivors and you can ask questions here and others beside me will also respond. Just know I'm one of them if you have questions you may ask me anytime. My kids were young when I first got sick ..my son was 8 and my daughter 3. You will find out that your kids will survive this and be strong people because of it.
Never ever give up, life is beautiful, and when you feel down and ask, why me? Ask yourself why not me; because there are many out there worse off with horrendous situations to deal with. Smile and know you will conquer this. My prayers are with you. Take care.
vicky61456 enci
Posted
Hi, you poor thing,you have been through so much already and now this. I have had 2 ops but that was mainly because someone finally listened to me when I said that something was not right. Turned out that I had a sever sinus infection which had got into the potuitary gland.Are they going to do exactly the same op? Is it that the tumour has re-grown? I am hoping that others will reply as well. Please don't feel afraid or alone, have a good cry and if you can a duvet day. Your family and husband must accept the fact that this is Cushings, a horrid disease. We are always here for you. Keep in touch and treasure your little one!
enci
Posted
I'm so happy that some of you has already answered. Dear Cycliccushings, I've just read about your type of Cushing's. It's very strange. I have to read more times to understand it better. Can I ask what were your typical symptoms? How are you feeling after your 2nd surgery?
Dear Ann, to be honest of I weren't have a baby to looking after it would be easier or out shouldn't hbother. But also she is make me feel stronger because I know she needs me. The last few weeks were very difficult cause she can see me when I'm broken or crying or just shouting with everyone for no real reason then I look at her and I can see on her face that she feels like something is not quiet right with mummy even if she is too young to understand the happenings around her. I just hope after my MRI soon I will get calmed at least a bit.
Dear Vicki, I know what you are talking about exactly. Even just a few months ago when I was seeing another endocrinologist. I went for my appointment and he asked me How am I feeling? Then he said Don't say you are not well! Cause your blood test -was done 3 months before that- is good and your scan -which was done almost a year ago- is clear. So after it what could I say? I just said in OK but my period is Irregular and I beard is growing on my face but I'm OK. He said it could be the changes after giving birth. But I already felt that something is gone wrong again. He told me I don't need another MRI only next year sometime. So I acquiescenced and I thoughtmaybe it's just me and he's right. But I never wanted to go back to this doctor. Luckily I managed to make an appointment with my first doctor who diagnosed me 2nd time and she was concerned about me. Thanks God, looks she saved me again and I'm so appreciate that she's looking after me now. She gives me hope and she doesn't make me feel like I'm just overreacting my symptoms and listens to me. Most of the Drs I ever met make me feel I have to tell everything quickly cause they didn't have time to discuss or just listen you properly.
enci
Posted
So I'm really happy to found you guys it's like I belong somewhere where people has the very similar problems from time to time and so I'm not shy cause I'm sure most of you gone through almost the same situations and so understands me. Those group encourages me to speak out what is hurting me in my mind or what are my concerns and I hope I can encourage others too to do the same and speak out. Reading your stories is tearful but encouraging too but very interesting as well and probably we can share information or experiences or support from each other.
I'm waiting for further stories from other companions too. But I hope there's always a happy ending. 🤗🤗
cycliccushings enci
Posted
Enci
Just know that you are not alone. There are many with this disease all over the world. As a rare disease it is harder to diagnose. Yes, I paved the way as the first "cyclic" Cushing's patient recognized. The week ICU stay to test me, were tests that showed them how to diagnose better. Although I notice you have a Dr that just doesn't want to listen, I can not tell you how many Dr's I went through to get diagnosed; I was called a liar to my face that I was eating to get fat, which was totally untrue, I was told I was crazy and "it was all in my head", lol well yes it was. I cried, I despaired and felt I was going to die before they got to my diagnosis. Symptoms you asked about; I had so many, they would change. I know now that that was because r the cortisol in my system would surge sky high and then drop. The anger, you can not help it, it's part of the disease. On my first surgery in 1989 I locked my hospital room door as I would come unglued over the littlest stupidest things. I had the three personalities; me normal. Then Jekyll and Hyde I called them, Jekyll rarely slept, talked very fast, could do an enormous amount of work and multitasking was insane. Hyde wanted to sleep, was depressed and angry all the time. I had the Buffalo hump, the moon face, acne on my face and bidy, cysts.I got cysts on my eye lids and needed them laced several times. I was still working up.until January 1989, I lost my job when the Dr's accidentally punctured my right lung doing a intercostal pain block in my side at every rib, numbing my abdomen, where I hurt bad from a previous gall bladder removal. So I gas to accept I wasn't working anymore, my employer wanted releases from all 23 drs, which I knew that wasn't happening. Another symptom is the lack of concentration, some days I was sharp as a tack, and others I would not he able to converse normally, I called it the "stupids." The emotional turmoil you are experiencing is normal, the "anger outbursts" are normal, the "crying jags" are normal. Some days you won't feel like eating much if anything, other days you may be just starved. I would also feel like I had the flu and even my eyes would look sick. This was during the 9 years it took to diagnose me.
This last tumor, how we diagnosed it, is I woke up with half my head numb, so I went to er thinking possible stroke, and my vitals were great, so they did a mri with dye, finding a large pituitary tumor. The surgery was easy and excellent, out of the hospital in 2 days. I know that sounds pretty good, but I have had numerous other medical issues and I will explain that if you have questions. If you have any question, if I haven't answered what you wanted to know, just feel free to ask me.
enci cycliccushings
Posted
OMG it sounds you prescribing just exactly me. OMG I'm speechless. 😮😮😮 Do you take some extra Hydrocortisone when feeling tired or bit down or as you said when you're Hyde personalities
enci
Posted
enci cycliccushings
Posted
I've seen there's different types of cycles from 12 hrs to 85 days. What is yours?
cycliccushings enci
Posted
EncI
I do not take any medications for Cushing now. But with the first surgery I was their guiennie pig, I had so many pills it was ridiculous. My cortisol in me was so high before surgery for so long, that when they gave me their low dosage steroid, it was not enough to sustain my cognitive functioning. They would not listen the me, the drs, so I worked with my psychologist and made a graph of the changes I dealt with when I had low dosage and just where I would regain my cognitive functioning with what mgs of meds. I video taped the changes in my personality even. It took me 5 years to come out of it and resume back to my normal personality, I got off all the meds.
Although I'm still fat...I weigh 225 lbs and am only less than 5 feet tall. Every year I end up with some kind of surgery, been that way for 29 years...so pray for me that 2017 is my year. I've had 16 hand.surgeries due to degenerate bone disease (I believe caused by 9 years with high cortisol in my system),
I've had my gall bladder removed, 3 subsequent hernia surgeries caused by that gall bladder removal, kidney stones 8 times, the accidental punctured right lung, my right kidney removed and the bowel jnjury, the massive hernia surgery, the 2 brain surgeries for pituitary tumor, just had a tmi stroke, and severe cellulitis in my right foot and just diagnosed with severe degenerate bone disease in that right foot. But I'm not giving up. I will never give up trying to better my health and my situation. You are young and have your whole life ahead of you, I've shown you what I have endured so you can put your situation in perspective. The future can be very good for you, let the drs do what needs to be done and have faith that you will get through this and overcome it. My cyclic Cushing was cured with the removal of the pituitary tumor in 1989, it was secreting cortisol. The 2nd tumor this year was producing ATCH secretion. You need to have a MRI every year of your head with dye. Make sure it is done. So I hope I have inspired you to get through this, draw in your family, let them know you need their love and support and to understand that you did not cause this, that their is.a road to recovery and yes you will survive this.
KarenNY cycliccushings
Posted
Happy New Year cycliccushings and enci. Just reading your posts and felt compelled to say, "Hi". I was diagnosed with Cushing's Disease in 2002 after suffering from it for many years without knowing it.
I had transphenoidal surgery on 3/3/2003 to remove a 5mm ACTH producing adenoma (tumor).
I wanted to let you ladies know that I am thinking of you and completely understand just about everything you have dealt with. I was literally dying .....especially 3 months before the surgery. It is incredibly frightening and devastating what this nast disease does to your mind, body and spirit.
I was very blessed to be 'cured' immediately following my surgery. I only took replacement Prednisone for a few months and aggressively weaned off of it.
I am tested regularly and, so far, I am doing very well compared to how extremely ill I was. It was absolutely monstrous and tragic what I went through.
But, thank the good Lord for good doctors and surgeons.
Cyclic, I was wondering, if you have any personal theories of why us 'rare' sufferers of Cushing's Disease actually get the disease. It is just something I have always been very curious to hear what others think might cause it. Why did our bodies decide or have the need to grow an ACTH producing tumor.....or a Cortisol producing tumor.
I have much respect for you being such a lonely pioneer with this disease. It must have been so much harder back then. At least in 2002the Internet was booming and I had a very solid online support group that totally helped me get through the worst times. I had access to so much info straight from fellow 'cushies'.
I have been getting small infections lately......you know, the sties in the eyes and little cuts on my fingers that don't heal very well. I will always be hyper aware of any familiar symptoms coming back. For me, the skin problems were the earliest symptoms I had.
Enci, I never, ever, ever thought I'd feel normal again when I was ill before surgery. I mean, I was in hell and nobody....I mean, nobody understood what I was going through. Even my closest, dearest friends and family members could understand. Even the doctors don't totally 'get it'. Only another Cushing's sufferer can empathize with you.
I wish you both well and if you ever need someone to chat with....just holler.
I am in New York, USA.
cycliccushings KarenNY
Posted
Karen
I believe Cushing's disease is heriditary. I believe I was born with the tumor. At age 3, I would ask to go to bed, not your normal choice at age 3. My feet quit growing when I was 11, I was always underweight through my grade school to high school years. The teachers would comment on my report cards that i was seriously underweight. I was the smallest kid in my class and the youngest and always got picked on because of my small size. I weighed just 89 lbs when I graduated high school. When I got pregnant with my first child at age 19 I began to have lots of acne on my face. I think this was the first outer showing of the tumor in my adult years. The small size, the tiredness, my feet a warning sign but in 1950s,and 60s they had no information on cushings, if so, it was so rare last thing what a GP would think. I really didn't notice being sick til 1981 I was 30, it started subtle, maybe flu like symptoms, overly tired, sleeping more. But during that time I was in a car accident, and then 2 more car accidents not my fault none of them. Had back and leg injuries and went through those while the Cushings escalated some making it more complicated to diagnose. I took a chance in 1986 and went to Spokane a 4 hour drive and saw new drs, they diagnosed me clearly with Cushings, my drs here took more tests, they didn't match my blood and urine. They dropped the ball here and said I didn't have it. I was getting sicker and sicker with more symptoms and no diagnosis. I remarried and moved to Seattle where I went through hell being passed around, being told I was lying, etc about my symptoms and eating, I ballooned then and weighed 276 lbs, had the Buffalo hump, the moonie face and awful other symptoms, so I ended up with the 23 drs in 1988, and my accidentally punctured right lung set the stage for them to find out where the tumor was. A radiologist saved my life by seeing the pituitary stalk was bent, the tumor was so small they could not see it, but it really played havoc with my body. The size if the second tumor I had removed in may this year, was huge, the size of a dime. Was pushing making my face and head numb.
So really I believe that we are born with the tumor, it rears it's ugly head when its ready. I do also believe that recurring pituitary tumors happen more than we know, and to be safe have a mri with dye every year with your neurosurgeon. I got lucky as,the neurosurgeon who operated on me in 1989 was a resident then and I found him and he operated on me this,last may for the 2nd pituitary tumor and is,watching me yearly now.
You are right when I had the pituitary tumor in the 1980s no one knew about the disease, I was the only cyclic cushings patient and there were no other cushings patients in Washington state. I had no suppirt, my family was difficult and unbelieving about the tumor, and the doctors were as baffled as me during that time as I was something totally unheard of. So no support from the drs either. Not much. I had one internist who really cared about me and he was instrumental in all the drs I was referred to.
So yes now days there are several support avenues to help those being diagnosed now so you know you are not alone.
KarenNY cycliccushings
Posted
Thanks for replying. Your theory about being born with the tumor is interesting. Although, I didn't have the same types of physical problems as a child that you did. But, perhaps we are all different in how the disease manifests itself in each of us.
I have been reading a lot about how the pituitary tumors recur much more often then the experts previously thought. Especially when looking over a period of many years. Back in the day, they did not have all the statistics and all. I see that is what happened to you. I am going on almost 14 years since my surgery. I do realize it is very possible that it might come back. The cyclic Cushing's is what worries me.....because it is so hard to catch it during the testing.
You are a strong woman and I am so sorry that you had to go through this again. But, thank God, you are so very well informed and have excellent doctors. I read your post how you explain that the surgery itself isn't so bad. I totally agree with you! The actually brain surgery is the easiest part of the whole disease.
I hope you are recovering ok. I'm sure it gets harder as you get older. I will be 52 this month.
Thanks for all the posts that i see you have written as it is so helpful for all the new people that are scared and dont know what to expect. You've been through it all.
I like your analogy of God wanting us to enjoy life like it's a nice boat ride.....not rocking the boat by looking backwards or too far forward and ruining the moment.
My Mom and I ecall it "the river of life"...... you have to keep flowing with the river......you can't swim against the current.....wherever God takes you...that's where you have to go.
also, like you posted, as horrific as Cushing's can be.......it could always be worse......at least it is (mostly) curable and there are those that suffer far greater then we have. I do not want to downplay or ignore how terrible the disease is....some go through many surgeries and radiation and have a heck of a time getting cured.
My Dad was diagnosed with brain cancer the same week I was diagnosed with Cushing's Disease. My pituitary tumor was only 5mm....my dad''s brain tumor was 5cm. His cancer was called GlioBlastoma Multi-form, the fasted growing brain cancer there is. He suffered greatly and died within 9 months. One day he was perfectly healthy and strong as an ox and then within a month he was having horrible headaches and weakness. It was just devastating. I survived and he did not. He was only 63 years old and had just retired and deserved to enjoy his new sailboat and his newest grandson.
It was the saddest thing I have ever been through.
Anyway, I do hope you are feeling well and enjoying your family and life and I appreciate that you post here. I am certain that there are many people that you are helping that you don't even realize.
Your career sounds so interesting and creative. I'm happy that you are able to continue with it despite all your medical problems. I bet you are really quite good at what you do.
cycliccushings KarenNY
Posted
Karen
The first surgery was more complicated as I had so many other underlying problems, although my cheerful constitution about going thru horrific things made it easier foR my nurses and drs.
In no way di I want those reading this, who are just getting g diagnosed to feel it will take forever to heal or to have long recovery times. We are all different, no two Cushing patients are the same. We all present different blood and urine results and may have totally different symptoms. But the main classic symptoms are the Buffalo hump, the moon face, trunk obesity. Fast rapid weight gain, without overeating. I have found most Endocrinologists to be arrogant and rude and non listening. Trying to jump the hoops to get to the neurosurgeon to see you seems difficult. I had hoped that the new techniques to test for Cushings would help others get a quicker diagnosis whether they had it or not.
But my life has been rewarding ad fulfilling even though I had horrific obstacles to overcome, I still excelled in my art work, graphic designing, digital illustration and I'm an accomplished pencil artist. I have been since I was in my teens. So I hope I do inspire those who are struggling through this disease to take,heart in what I've said. That you will overcome these hard days and weeks. I also believe that God is affecting many of the people around you who end up experiencing your illness. It isn't just you that is affected. Do not let the world to label you..yes I am disabled but when asked what I do I say I'm an artist, graphic designer and digital illustrator. Which is the truth, we are NOT the illness. If any of you want more information on how to contact for more support options just privately email me, I will answer as promptly as I can.
vicky61456 KarenNY
Posted
cycliccushings vicky61456
Posted
Vicky
Karen did not say she felt her Cushings disease was hereditary, I did. And I agree with her that we are not sure yet how we get the tumor. I believe mine was heriditsry and that I was born with it, no I don't have proof of that statement as no one knew back in the 1950s enough about cushings, and it is still a rare disease and I with "cyclic" cushings is even rarer. However, I find the theory that cushings is caused by transfusions or excessive use of antibiotics interesting. I know of children who have gotte
cycliccushings
Posted
Vicky
I'm sorry I keep trying to post and I lose it before I can finish the reply. Like I was saying, I knew two twins a boy and girl, the girl had cushings and died at age 9. I also know animals have been diagnosed with Cushings. I did not have excessive hair, nor did I have excessive sweating for either of my Cushings diagnosis. So I find your theory interesting. I have read numerous statements of Cushings patients and we all present different symptoms, and I believe we are all different. Those statements came from cushings patients who their statement were printed in our quarterly newsletter that has been in publication since 1990 or earlier. With several endocrinologist on the board of directors, some outside of the U.S.
So no I do not have proof that my pituitary tumor was heriditary, there was not.much information about Cushings in 1950s and my GP had no knowledge of the disease and if he did I doubt it ever crossed his mind that I had Cushings. Cushings is a very unique disease and still hard to diagnose. So I still think it is an interesting theory. I just know I don't fit into the criteria you listed. Having any kind of research on this devastating disease is awesome. So I thank you for sharing your theory with us.