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Weight loss after surgery

Posted , 29 users are following.

ashdblack
ashdblack

I have just recently been diagnosed and they are almost positive that its a tumor in my pituitary gland but an MRI will confirm or deny. I'm curious about anyone's weight loss experiences after the removal of the tumor? That has been the hardest thing for me to deal with truthfully.

2 likes, 96 replies

96 Replies

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  • vicky_65919
    vicky_65919 ashdblack

    Posted

    Hi there. My tumor was in my adrenal gland. About 1 month after surgery I began to lose weight. It came off pretty quickly. 40 lbs in 5 months. You do get better fast though I’m still not great but hoping to be so soon. 
  • hollydoll25
    hollydoll25 ashdblack

    Posted

    Through what was essentially a starvation diet that I would not recommend. I actually lost 100 lbs the year before I had my surgery. I dreamed and dreamed and WISHED and HOPED that I would lose more weight after the tumor was gone and my levels normalized, but I experienced the opposite. I gained 20 lbs. following surgery & am finding it impossible to lose weight despite walking 10k+ steps a day since I can't run anymore and the gym with a personal trainer 3-4x per week. I know this isn't the answer you wanted, but I didn't want your heart to be crushed when mine was when all my expectations were blown to dust. I am hoping that your story goes differently and that you will experience a much more pleasant healing experience, but it's important to anticipate that there will be a million things you never even thought about that come to light after surgery. xxx

    • vicky61456
      vicky61456 hollydoll25

      Posted

      Thank you Holly for being so honest.  When I first started this Forum I was determined that we would always tell the truth no matter how hard it may be.  We need to learn that we all have different roads to recovery and yours was certainly very different.  Hope you will be at full strength again soon.
    • stefanyefany
      stefanyefany vicky61456

      Posted

      Hi,

      I am a 25 year old female and I am 5 months post opp. I have been having problems of what seems like inflammation but I'm not sure if it's just part of having low cortisol levels. ItS like a burning feeling through out my whole body and my skin is red and rashy when it happens. I also have so much pain along with it. I was wondering if anyone experienced this and if its just a normal low cortisol symptom...also I havent lost any weight since post opp. And I still have muscle weakness on and off. Just wondering if this is normal. I still don't feel well at all but I am always continuing to improve. Also if any one took any supplements that helped during their recovery I would love to know....especially immune system supplements because my immune system feels so shot...I guessing it's the low cortisol. I'd really appreciate any help. Im not sure if this was the right place to ask but I saw a forum talking about cushings. Thanks so much!

      Stefany

    • patty44596
      patty44596 stefanyefany

      Posted

      I had a burning feeling in my legs. Found out my pottasium was low and Vitamin D. Dr recommended bananas, coconut water and vit D supplements daily.
    • vicky61456
      vicky61456 stefanyefany

      Posted

      Hi I just wondered if you were on steroids to get your Cortisol level back to normal.  Your Endo will probably have done this.  I did not experience the burning sensation but it does take a while for your body to recover.  It may be that you will need extra drugs to help your hormones.  Talk to your Endo or your GP.  The weight loss should be quite quick at the beginning I lost a stone fairly easily and then gradually the weight cam off.  Please do talk to your Endo.  Your body has undergone a massive shock.  I have to be on Steroids for the foreseeable future, I take Levothyroxin for my thyroid.  Let us know how you get on.  We will always be honest with you.
  • kayla07
    kayla07 ashdblack

    Posted

    Hi everyone, I hope you don't mind me cutting in here however I am currently going through the tests for cushings syndrome. My cortisol blood test came back at 690 however my GP is still unsure if it's just a false reading. Tonight I will be taking the dexamethasone tablets.

    I am hoping I can get a diagnosis because I've been experience these symptoms for years and taken all this time to get to this point... I am unsure what exactly happens next though

    • vicky61456
      vicky61456 kayla07

      Posted

      Hi I wondered how you were getting on with your tests?

       

    • brandy11861
      brandy11861 vicky61456

      Posted

      I no longer require testing. I do see my endo yearly and get cortisol checked at that time. 
  • brandy11861
    brandy11861 ashdblack

    Posted

    I’m 4 years post adrenelectomy from cushings. I now weight 106 lbs, I was 200lbs going into surgery. 
  • kayla74536
    kayla74536 ashdblack

    Edited

    AM soooo glad to have found this discussion. My surgery is within a month and am hopeful!
    • brandy11861
      brandy11861 kayla74536

      Posted

      As you should be hopeful. 

      IF you have Facebook please join the Cushing’s syndrome/disease support group. 

      GOod luck and congrats on the upcoming surgery. Know that it will be yet another journey and you’ll have some struggles along the way. Being adrenal insufficient is a whole new world, and it will seem to get worse before it gets better. 

      AS far as the weight the weight though, my weight poured off around 2 mo post op. I hope the same for you. 

      Please feel free to email me if you ever want extra emotional support or advice.

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    • vicky61456
      vicky61456 brandy11861

      Posted

      Hello ALL When I started this forum some years ago it was because apart from the official site most other sites seemed to be made up of people who had never been diagnosed with Cushings who were giving advice about something they had no real experience of.  On this forum we have HAD Cushings..  I looked at the Facebook page and did not find it helpful.  Please can I ask that you do not use this forum to send people to other sites.  I will always tell you things as they really are.
  • laura37766
    laura37766 ashdblack

    Posted

    Hi. Im not sure if this is a really old post or not but i've just come across this site and ive been sobbing at some of the responses. Ive only just had a proper diagnosis but i think ive had cushing's since 2016. I have a 12mm tumour in my pituitary gland and i have all the symptoms described. I'm in the Uk and i'm awaiting surgery. I'm 44 and i've been struggling to get a diagnosis for so long its been soul destroying. The amount of friends, doctors, family members that have judged me unfairly and treated me like i'm lazy and fat. I can't even begin. I loath myself and avoid looking in the mirror. To read others expressing the same feelings means so much to me. My health is in serious decline and i'm really scared that i'm not going to make it through. I have two children and i've been unable to work since 2020 because of my poor health. This has completely taken over my life. I hope i'll be able to have my surgery soon and hopefully a successful recovery. I wanted to thank you all for sharing your experiences, as its honestly helped me so much.

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