#CushingsGotMe

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i was diagnosed with Cushings  three weeks ago. I have benign tumors on both my adrenal glands. I gained 70 pounds in the last 5 months and i have all the physical attributes that this rare disease has to offer. when i first got tested for cortisol i was leaving for a vacation and that's when I was told I could have something called cushings. My pitutiary glands are clear but the CT scan showed tumors on both my adrenal glands.

I'm meeting a third endocrinologist tomorrow morning. i need surgery asap. my body looks like s**t, I'm breathless all the time and I'm super uncomfortable. 

I am an educationist. i work as a guidance counselor in a university college. its college application season and i'm always busy. i am a very positive person and being happy is a requirement of my work as well, its been a struggle, the last ten months. But i know surgery can help.

i don't go crazy reading online or obsess over anything. Quite frankly i don't have the time.but I'm so glad I was reading last night because i landed on this page and i got to read so many people's journey and struggle with this disease. it made me feel less lonely and miserable. Thank you so much for letting me be part of your lives and sharing so openly,

it gave me the courage to share as well. i will go see the endo tomorrow, i have read up on key hole surgery and i want to save one of my glands. i don't want a a complete adrenalectomy. fingers crossed. 

  

To all of those who are reading this, whether they're struggling with Cushings or some other challenge, i am sending you loads of love and positive energy!

Shall keep you posted!

xx

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12 Replies

  • Posted

    It’s a hard journey getting diagnosed I hope you get the asks you need at your appointment with your endocrinologist.. it is a good site to be on as you and read other people experiences..

    l am on the beginning of the journey and waiting blood results..

    i am an ex nurse so like you I have not spent time googling but did find this forum but accident..

    i have been very look my doctor has put all my symptoms together but it’s taken over 4 years..

    One of my symptoms is excesses sweating which has cause me not to go out plus gained 10 kg in six months and now diabetic I am so fatigued I sleep most of the day.. I am lucky I have a wonderful husband who understand what I am going through..

    sending positive energy on your recovery and would love to hear how you are doing..

     

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    • Posted

      Hey

      What did the blood results say? I had three more hormone tests and a thirds 24 hr urine test.

      Meeting the laparascopic surgeon tomorrow  to see if we can schedule the surgery for wednesday.  I feel really sick these days. My work is stressful and i cannot afford fatigue. My buffalo hump hurts, my belly swelling gives me a bad backache, i have headaches and my moon face is ugly. 

      I cant wait to get rid of my tumors so i can lose all rhese physical abnormalities and get my energy back. The fatigue is crazy..

      Please let me know how youre doing. Will oray fir you abd sending you lots of love and positive energy.

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    • Posted

      My blood test came back normal and my doctor said they all all he could do I cried as I feel so poorly.. I ask to be sent to a endocrinologist I am having to pay I found her at a private hospital very near my home saw him on Thursday he was so lovely very kind.. I have more bloods test today and got to do two 24 hours urine test also having a echo gram and a ecg and a scan. Having been diagnosed with diabetes I have cut out bread cereals potatoes carrots parsnips rice pasta cake biscuits sweets and in four weeks have lost not a ounce. The consultant said I need to be on medication so prescribed two medication.. The consultant said I should not be paying he said my GP should have sent me NHS.

      l am having trouble eating and very fatigued and sleeping a lot my feet are so painful it’s hard to walk sweating a lot my heart is racing

      l hope your journey goes smoothly and you will feel better very soon.

      its a battle to get anyone to listen and understand how you feel.

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    • Posted

      Oh my god! This all sounds so horrible. I’m so so sorry that it is as difficult as it sounds. I have had this bloating, battling weight, depression, fatigue, mood swings, immense swelling, body ache and anti social self esteem issues for 18 years. The symptoms would come and and go and hence this never gut detected. 

      The radiologist who did my CT said he had never seen such high levels of cortisol and chances are ive had these tumors growing inside for the same length of time.

      I met the chief laparoscopic surgeon last Monday. He was quite calm and confident and said that he had an opening on the 1st of October. He would like to plan it and not rush into this. 

      I might have two procedures since I have bilateral adenomas rolleyes

      I don’t think of the surgery. I work 9 to 11 hours a day so cannot afford to get riled up. I need the job and I need the money so I think I get this artificial surge of energy and that keeps me going till my work day ends 

      As soon as I get home I feel like a very sick person. The fatigue kills me. J have a permanent 7 month to 9 most days preganat stomach, my hump has grown, my moon face is ugly and I’m always always breathless. I can barely bend and takes me 3 minutes to get up from the couch. I can’t climb too many stairs and neither can I work out. Right now I’m lying in bed and I can barely type in my phone. 

      It’s a struggle everyday. I do feel relieved that I know what’s wrong and will get a surgery but I don’t know what to expect after. I still don’t know if they can save part of my adrenal gland or not.

      I’m so sorry you’re going through a tough time. Please keep writing. I wish I could do something to ease your pressure or lessen your pain and frustration. But I’m here to listen and talk as much as you want. You’re NOT alone! 

      Big hug. Let’s do this together!!

      I am suffering daily too and people are very cruel. They all keep coming to me telling me I have gained so much weight. I don’t explain anything to them. I just respond saying I will lose the weight when the time comes.

      But these are all petty silly things. What matters is mental and physical health. 

      You need to be strong and thick skinned. I’ll be there for you and help you along the way however I can. 

      This shall pass. Be positive and say thank you everyday for this getting solved already and trust me it will.

      Mind is very powerful. Use it to your benefit.

      Sending you loads of love and positive energy!

      We can do this!!!

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    • Posted

      Hi Pathan,  I am so please that you are some answers and will be going in 1st October I will be rooting for you and I am sending positive energy back to you. 

      I took back my 24 hour urine today one is going to Kings College London and will take 6 weeks don’t know how longer the second one will take.  I had my  blood taken on Monday just waiting on results. I have a Echogram book for 28 th and ECG 2nd October then just need scan.  I could have cried today my feet and hips were so painful I could barely walk and I am so tired.  I have cut out all carbs but still lost no weight. 

      Your a lovely person and so kind of you to reply to me thank you. 

      Take good care please let me know how you get on. Big hugs. 

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    • Posted

      Thank you so much for the positive energy and warmth.

      What did your results say?

      I had surgery on the 25th. Taking one day at a time

      Please keep me posted. sending lots and lots of positive energy, good vibes and hugs!

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  • Posted

    Hi Pathan. I found this group very useful. I think when I read the Facebook groups they ended up giving me anxiety cause it was just too much an a lot of negative. Well it seemed that way to me. But this group was very helpful an the people in it are very good. 

    I had tumours In both my glands, they removed one end of Nov 2017 

    In the hope I won’t need other one removed. So far so good, it hasn’t woke up though. So I’m on steriods now. But doin so well. But it was rough following surgery. U have to remember though, we are all individual an we are all differnt. So what might happen for us may not for u. My blood pressure took months to drop followin surgery, where others didn’t. So it frustrated me an made me panic. It has finally dropped though. It just takes time. That word I hated to hear. Lol. But it’s be kind to urself, it will be hard but keep strong An good attitude even in the hardest days An u will get through it. I’m back at work now, lovin life, I’ve still a lot of weight on an I get tired but nothin compared to before. If I could lose this three stone I’d be winning an totally back to myself. If you’ve questions feel free to ask but remember ur journey will be ur own journey. But we are all happy to help. 

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    • Posted

      Hey 

      Thank you so much for your kind words. This means so much. 

      It’s true that it’s our own journey and al bodies are different. I have all ghecrazy symptoms apart from sweating, irregular period cycle and acne. Otherwise the fatigue and body ache and bloating, moon face, hump and mood swings are ALL very very much there.

      I can’t wait for the surgery but I don’t know what to expect post surgery. I’m hoping he can do it in one surgery and also save a gland. It’s laparoscopic so I’m hoping the recovery time is less. I have so much work and I work under so much pressure. All I am convened about is how will be post surgery. If I get operated on Monday, I have a major event in Saturday which cannot even be postponed. All the invitations have been sent out. I know this all sounds petty but it’s stressful since everything depends on my salary. I cannot afford to lose work. I hope I can recover and also lose the weight and the hump and the moon face.

      I look so ugly and feel so sick. But I’m very very positive. I believe this has been diagnosed because I need to cure it. So that’s the attitude I have while dealing with all this.

      Thank you for sharing your experience. Please keep me posted. 

      I hope you lose the weight you’re tying to. Does the metabolism get better post surgery. Nothing is working on me right now. Whatever I do I’m keep gaining weight or stay the same.

      I love my work, however crazy it may be, so that keeps me sane.

      I will keep you posted. The surgeon will confirm the date of the surgery this week hopefully.

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    • Posted

      Ach Pathan. I do feel ur pain honestly I’ve been there. Please remember we are definitely all different on this journey. But I was told post surgery would be worse. At my worst I thought this can’t get any worse, it jus possibly couldn’t, but unfortunately I was wrong an I’m sorry to say that (again remember this is not the case for everyone) but I was so unwell post surgery but in a different way. An for a solid two months I was so unwell. I didn’t know when or if ever I’d turn a corner. An I don’t mean to scare u by sayin this, cause I say too, we are all differnt. I went back to my work 6months post surgery, an I’m a nurse, an I really did struggle. As months pass, not weeks, months, I see improvements an feel so well. But u really are gonna have to be gentle with urself. An don’t expect to do things so quick, this didn’t happen over night so it not goin to rightify itself in one night. As months past u will see improvements. U might get a day or two an thing I’m gettin there an then u go back ways. Allllll completely normal. 

      I had  laprascopic  surgery. It still a hard recovery. I have it in both glands and they took the one that had the most tumours.so now the remaking one is sleeping.  They took one in hope that wen my other one wakes up it will just function an not over function, so far it hasn’t woke up but all my symptoms are gettin better. So fingers crossed the remaining gland gives me no bother. 

      U seem like a hard worker an I know ur job an work is very important so it not  petty at all what u say. but trust me ur health is more important, I would prepare myself to be off. Please please be kind to urself following surgery, because u want to get better not set ur self back. Do keep us posted. An if I can help at all just shout. U will get there, trust me I never thot I’d see today, An look at me know. Ive shocked myself an u Wil shock urself too. 

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    • Posted

      Hey,

      Thanks for writing back. It is so encouraging to read your reply.

      Quick update. I had my surgery on the 25th of October. Like you, I had tumors on both my adrenal glands. My doctor suggested vein sampling to determine which one was giving me more trouble. The result showed the left one, which was significantly smaller but producing a lot more cortisol. My doc decided to do lap surgery on the left one for now. So I got that done.

      It’s been exactly 2 weeks now. The first few days I was in a lot of pain, then there was gastric chest pains. The gases had somehow managed to get stuck in my chest area and I had shooting pains. I couldn’t sleep for nights. I also suffered from constipation, which was very alien for me since I’ve never had that problem.

      I’m reaching out to you because I wanted to know realistically how long does it take for some of the bloating to calm down? For some reason I think mine is worse now. The bloating on my left ankle sometimes calms down but then it comes back. The moon face and buffalo hump are very much there but the worst of all of them is my stomach. I look nine months pregnant. No kidding. It’s been like this ever since the surgery. It gets super distended and the surgery incisions pull and it hurts even more when I eat. I still get very breathless, I pant all the time, and the chest pains haven’t gone. Anything I eat makes me feel that way.

      I’m supposed to go for my am pm cortisol test and my 24 hour urine cortisol test. Will be getting that done next week. I really hope the other tumor is not producing too cortisol and my Cushings is gone. What do you think? How long did it take for your symptoms to start disappearing? Right now I have no way of knowing. Does the stomach bloating take very long to go? And the rest of the ugliness 

      I have been very positive till now and I will continue to be. But it is so hard sometimes. I am hoping my test results will be good. But till then I don’t know what’s going on. I was hoping you would have some answers maybe.

      How are you doing otherwise??

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    • Posted

      do u mean u joined work after 5days? that amazing! how are u feeling energy wise? sleeping ok?

      well for me everythin happened in different stages. i was really ill for two months, constant nauesa, i was constipated no energy still wasnt sleepin great. the bloating took few months to start to deflate. it is unfort a long process in some cases, which is for me. an u will be worse before u are better unfortuatley. are u on steriods now? i do think ur other gland wont be producing just yet. but u will be worse before ur better.

      i had review yesterday an im waitin to hear has my gland woke. but my energy is sooooo much better than what it was. i sleep better now too. not great but better. still have odd palpations an blood pressure is still questionable. im near a year post surgery now. so u can see it really does take time. im sorry i cant be more help. but u might have at least two months before u see any changes. i think it was about that period for me. but ur doin the best thing about bein positive, and why shouldnt u be! ur life is goin to improve! that everythin to be positive for!

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