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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

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  • cycliccushings
    cycliccushings ashdblack

    Posted

    Absolutely not...a diet of 500 calories a day is not healthy and just might kill you in the long run. Please do NOT do this. Your pituitary gland is your master gland of your body, it runs everything , your metabolism ..even your skin. Eating this low of calories after a pituitary surgery may end up with your death..I am NOT kidding. You body will go into starvation mode, may cause more serious medical issues on top of your Cushings disease. I understand your desire to have your weight back to normal, but not at the price of your death. Believe me I understand this more than you know..I went from 105 lbs to 276 lbs on 6 months..so I do understand..give your body a chance to heal. Please keep in touch with me as now i will be worried sick you are going to do some thing drastic ...which will not work..please believe me
    • youmemk
      youmemk cycliccushings

      Posted

      thanks dear for your support and advice

      but really I am scary that I will never get my normal size or even back to my normal life ... I missed all my activity ... I canot go out of my house ,cont go to work ..canot ride a horse.. canot travel

    • cycliccushings
      cycliccushings youmemk

      Posted

      Do not think that you will be this way forever, that is not true at all. I had it really bad and it took them too long to diagnosed me. They caught yours earlier. If you follow the drs advice and give yourself time to heal..in 6 months to a year your body will change back to you naturally. You will again go out, drive, ride your horse..etc..I started getting sick at age 31, I had surgery at age 38 close to death. I have endured my call bladder removed, 5 hernia surgeries, a accidentally punctured lung, kidney stones 8 times, i had one kidney removed and they ripped open my bowel, that caused a severe hernia, I've had 17 hand surgeries and the 2 brain surgeries. I have upcoming hand surgery next month and they just found a tumor on my only kidney. So see...I'm still driving my car, im now 66 years old, im a graphic artist, a digital illustrator, web designer and i still draw. So im trying to show you im a survivor.

      Your Cushings you will heal fast and do really good with weight loss and getting back to normal If you just do what the drs say. And no diet...balanced meals..1200 calories a day.

      You will lose. Watch your carbs, no sweets and drink lots of water. You are going to do great. We are all here for you, to support you and cheer you on. You arevSo lucky to have this forum. I knew no one with this disease for a long time after my first surgery. You can look online for the Cushings Support and Research Foundation at CSRF.net and they have quarterly newsletters that will help you and you will find more people to share and learn from about Cushings disease. If you have any more questions please let me know.

    • vicky61456
      vicky61456 youmemk

      Posted

      The people on this Forum have all had experience of Cushings and can only tell you the truth.  You do not need to diet, you will be able to return to all your activities.  You may need to check about flying though.  Just be patient, we are all here from you waiting to offer you advice on what we know.  Please listen to us.
    • youmemk
      youmemk vicky61456

      Posted

      thanks and I appreciate your support and advice

      i will try to be patient

    • youmemk
      youmemk cycliccushings

      Posted

      thanks a lot dear ... i am so glad that you let me more optimistic

      again your support and interesting are highly appreciated

    • cycliccushings
      cycliccushings youmemk

      Posted

      We care about you. You will do just fine in surgery, please know that your surgical team know exactly how to treat you. They will be supportive, make ypu comfortable, ease ypur fears and this surgery to me is a pretty easy one as I've endured it twice and if i compare it to every thing else I've had to go through, it's the easiest. Ask your dr questions, if you have fears voice them to your Dr and let him explain so you won't be so apprehensive. If you have any more questions to ask any of us feel free to ask.

    • youmemk
      youmemk cycliccushings

      Posted

      hi , how are you ... I hope this msg find you are doing well

      finally I did the pituitary mirciadenoma surgery last week

      and I have been discharged by yesterday ...

      now I am on hydrocortisone replacement therapy ...but I wanna to know more information about the dose that you took it as they gave me on day before surgery hydrocotisone 50 mg IV every 8 hrs and after surgry they switch to oral hydrocotisone 40 mg every 12 hrs  untile tuesday but I feel it is high dose ...

      so plz if you have any information regarding to dosage and tests can I do it to clarify my treatment as I dont trust in all my doctors .. so it is good for me to have some ideas about the therapy

    • vicky61456
      vicky61456 youmemk

      Posted

      I was not given any hydrocortisone before my op on the tumour in the Pituitary Gland but was put on 20/10/10 to begin with then lowered to 10/5/5 which I am still on 5 years later.  I have been told that I will be tested again soon to see if I still need to take the steroids but my Endo thinks that I may need them for life.  We are all so different and many of us will be finally weaned off them altogether.  You must though reduce the dose only when and with the help of you Endo.  Good Luck and please let us know how you get on as it helps other new Cushies.
    • youmemk
      youmemk vicky61456

      Posted

      thanks dear for your replying

      and I wish the best and excellent health for you

      I will update you and all about my case

    • irene64333
      irene64333 youmemk

      Posted

      Hey there. I just had my adrenal gland removed yesterday.  They gave me 100mg hydrocortisone IV every 12 hrs. Tonight they cutting it to 50 mg every 12 hours.  My surgeon says she will be sending me home with 15/10/10 mg hydrocortisone.  I think they are tapering dosage little by little.  Hope my information I'd useful.  Please let me know what dosage are you on now. Thanks 

    • youmemk
      youmemk irene64333

      Posted

      Hi Irene

      Acually, my story with my doctor is long.. They discharged me with wrong dosage and wrong drug, I am doctor of pharmacist so I know and I have idea about the therapy so I tapered the dose to 25 mg of hydrocortisone per day... I am taking 15\5\5

    • vicky61456
      vicky61456 youmemk

      Posted

      Hi how awful that your Dr discharged you with the wrong medication and the wrong dose.  Was this your surgeon or your Endocrinologist.  This shocks me greatly.  The doe when tapered is usually 10/5/5 which is what I take.  I do hope that you will soon be feeling better.
    • youmemk
      youmemk vicky61456

      Posted

      thanks vicky for your hoping

      actually, I suffered from them alot 

      they was endocrinologist ... dont shock dear in jordan you can hear alot of that unfortunately

    • irene64333
      irene64333 youmemk

      Posted

      Yeah, you are right.  They are discharging me today.  They want me to stay on 25 mg per day starting Sunday but before that day the dosage is higher.  I think they do it slowly.  I feel terrible is it withdrawal from cortisol??  So week. They say it's safe to stay with this dosage. But I feel worse than before surgery 

    • irene64333
      irene64333 vicky61456

      Posted

      Hello Vicky. Do you think it's normal to feel this week on the third day of surgery? I barely can walk.  Is it cortisol withdrawal? They lowering dose every day. I'm afraid to go to crisis 

    • youmemk
      youmemk irene64333

      Posted

      I had weakness after surgery ..i think it is normal 

      do you feel ,fever cold , nausea vomiting, diarrhea?

      if not ..so no need to be worried .. just tell your dr. about weakness

    • vicky61456
      vicky61456 irene64333

      Posted

      Poor you.  Your surgeon should have told you that 48 hours after surgery you will feel worse than you have ever felt.  My surgeon told me but I didn't really appreciate it till the 2nd/3rd day.  Felt truly awful.  Yes it is the Cortisol withdrawal.  It will take a little time for your body to recover after the sudden withdrawal of the excess Cortisol.  If you have any worries ask your Endo !  I really hope you will be feeling better soon.

    • irene64333
      irene64333 vicky61456

      Posted

      Thank you for your response.  I'm home already hope things get better from now on.  

    • irene64333
      irene64333 youmemk

      Posted

      Just weakness, terrible weakness and pain on incision site which is understandable 
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