Weight loss after surgery

I am 19 years old and I started experiencing my symptoms around August of this past year and I gained at least 70 pounds. Yes I have the typical weight gain in my mid section and moonie face.. Thank you for replying!

Then with that information, as young as you are, with such a short period of gaining the weight, I think once you have the surgery, your recovery will be quite short and you will return back to your normal suze. I'm not positive but in my opinion this is so. I been dealing with Cushings for 30 years

Hi i first started getting symptoms in early 2011 and my weight doubled in in just 5 months (68kg - 139kg) it took just over 4 years to finally get a diagnosis

It has now been 4 half years since they removed my adrenal glands as the surgery to remove the tumor was not a success.

I have been struggling ever since to lose the weight.

I have enormous stretch marks over my body , my stomach hangs almost half way down my thighs i have three lays of roll on my thighs i dont recognise my body at all i avoid mirrors like the plague as i have only managed to lose 26kg since having the surgery i have not met anyone else to have gone through this and the medical profession has let me down big time over this as all along they were telling me it was my eating in the first place to have gained the weight. prior to this i had never had a weight problem i had 3 boys and was 32 when this started i am now 41 i had a heart attack last year and have been trying to get the weight off as my doctor as said he will help me to get reconstructive surgery if i can get my weight down .

just some advice or your thoughts would be of a huge benefit as i feel so lonely in this journey and have all along.

Hi!

So just to give you an update on my life now, I actually ended up gaining around 120 lbs before the tumor was removed. I was around 380lbs when everything was done, and I struggled for almost an entire year before they were able to regulate my hormones. Around 2019 (2 years after my surgery) I finally started losing weight and currently am down 56 pounds! It is so hard, sometimes I still dream and I look like I used to but once I wake up I'm the same way I was when I went to sleep. I struggled so bad with looking at myself in the mirror and I still have a hard time with it. I am fortunate enough to have an awesome support system with my family and I have slowly been building up my wardrobe so I feel comfortable with going out. Being motivated to eat healthy is so hard when it seems like it's not working but if you are persistent then it eventually will work. I actually had to be put on metformin to aid in my weight loss because I have developed some insulin resistance. I am also so sorry to hear that your doctors let you down while trying to diagnose your illness, it's hard when they don't listen, you know your body best. I hope everything starts to look up for you and your health improves, please keep me updated!

Hi,

Its been 3 years since having the surgery and i know the feeling of isolation.... Depending on whether or not ur still taking hydrocortisone will depend on weight loss... just to provide some hope i did lose the weight but, it took a good six months... i have been told that the surgery took 10 years off... be patient i know but, patience is key....

Thank you for your response

i only wish i had found this site when i was going through the ordeal but not knowing what i had made things a bit too difficult i really appreciate you sharing with me im not sure where in the world you are but im in New Zealand where the specialists dont know alot about it i have only heard from people who have known dogs to have gotten this horrible disease but this is the first time i have spoken to other humans who have experienced it.

i dont feel so alone i have to take fludrocortisone and hydrocortisone for the rest of my life and the specialists wont allow me to work ever again they say any stress can kill me now .

I suffered extreme psychosis before they confirmed what i had also and was admitted into a psyche hospital where they gave me anti psychotics which i found out why i was in there also big weight gainer. I still hope to be able to return to something that resembles the old me.

Ive been working on improving my heart which was enlarged and packing up due to the extreme weight gain, i had heard of obese people that could hardly move or walk never thought i would become one of them.

The only reason i git a diagnosis was i had been working out and for a couple of weeks i had a very sore shin i thought i had just strained it , but it just wouldnt go away so i went to the emergency and ended up getting admitted turned out i had a blood clot in my leg they didnt know where to put me whether to stay in medical ward or be moved to cardiology as i was a very obese woman with great colesterol on the verge of having diabetes and a very bad heart two days later they move me to cardiology where an endocrinologist came to see me and told me what he believed i had .

funny thing was a year prior to this my psychologist had written a letter requesting i get tested for cushings and the endocrinologist i saw at the time said no it was just my thyroid.

Thank you all who share on this forum you have given me hope and most importantly encouragemant to keep striving for my goal.

i will keep you posted.

Take care

Ierene

Thank you i hold on to the hope that i will get the surgery

Im not sure where in the. world you are but in New zealand they are slow and dont like to give you anything unless they absolutely have to.

i am in Orlando Florida, not trying to encourage bad behavior but i took myself off of the hydrocortisone because my doctor wasnt aggressive enough... Truth be told the disease is very rare and not too many doctors know how to treat it ... If you ever are this way there is a great neurosurgeon in Gainesville Florida name Dr. Roper and endocrinologist in Orlando Dr. Ntim....Prayers.....

Irene ..what I have encountered is the only way I have seen improvement in losing weight it to cut your carbohydrates to very low. I use the My Fitness Pal app on my cell..it helps me chart my food intake, calories, carbohydrates, protein and fat...you can see the nutrition and it keeps a diary for you. charts your weight loss..eat things like: eggs, meat and veggies. fruit sparingly, if you are in the U.S.A buy Dave's Killer bread ..a slice only has 13 carbs...I keep my carbohydrates from 50 to 90 a day..do not do the KETO diet. Try this and see if you can get your metabolism jump started. And yes I understand the frustration of the IRS saying you were just eating..it took them 9 years to diagnosis me because of endocrinologists who are arrogant and don't listen to their patient. Realize every 3 years you will look back and there is some improvement. keep in touch.

Drs not iRS

Hi thank you i am in New Zealand funny you should mention the keto diet i have just done 1 month on it nothing i will look into your advice

thanks for the heads up

our health system is ranked one of the worse in the world out of the developed world now .

but im determined they will eventually pay for there misdiagnosis in the end as they try to cover it up im glad i kept all my paperwork throughout all this ordeal.

Thank you so much for your reply! Could you describe your recovery after the surgery? I've been doing a lot of research and trying to basically prepare for the worst but I would love to hear some real life experiences

I certainly will describe my recovery after surgery for you......I woke up screaming in pain after my surgery......not to scare you....but the reason was because of how they had me positioned for 5 hours on the operating table.  My arm was tucked underneath me for so long and it hurt so badly.  But, they offered me either Tylenol or Morphine once it was established that I was okay otherwise about an hour after surgery.

I was in the Neuro-Intensive Care Unit for 3 days and then I went to a 'step-down' type of intensive care for another 4 days.  I remember, once my arm pain went away, feeling very calm for the first time in many years.  The extreme excess cortisol gave me a constant, hyper, coffee buzz and it was so very nice to have that gone.

The morning after surgery......like 5:30am, 2 male nurses came into my room to wheel me down to have an MRI of my brain done.  It was difficult because I was very obese and weak from everything.  They had to help move me from a rolling hospital bed onto the MRI bed.  I do have claustrophobia and that was a hard X-ray to get through.....I barely squeezed through the narrow machine. At my hospital, everyone was extremely nice......but, basically none of my nurses had any clue what Cushing's Disease was. They didn't even know I had it.  They just thought I was a 'regular' brain tumor patient.  I brought pictures with me of the way I looked before surgery and they were shocked and quite sympathetic. I had to lay on my back for about 3 days before I was allowed to sit up.....they had taken skin from the side of my upper thigh to plug the hole they cut to get to my brain...through my nose. They needed this to heal to prevent any cerebral fluid from leaking.

When I got home from the hospital I remember being very, very sore.  My muscles were aching intensely. Cortisol is a natural anti-inflammatory and pain killer......my body got so used to the excessive amounts of it.  When the cortisol was gone, my body really went through withdrawal! I was so clueless, I didn't even take any over the counter medicine to help this.  I was also extremely nauseous.  You will be able to control this to some degree by adjusting your replacement steroid that they prescribe to you after surgery.  It will be a challenge to get the dose just right. You don't want to take too much because then you will continue to have Cushing's symptoms....but you also do not want to take too little because your body will be needing it badly.....you could go into adrenal crisis.  I weaned off of my steroid (Prednisone) rather aggressively.  I was anxious to jump start my recovery.  I was able to wean with off in about 2 months time.  But you must listen to your doctor as to your own time-line.  Some Cushing's patients need years to wean.

I had every text book symptom of classic Cushing's Disease.  I had full blown diabetes that required me to give myself 2 shots of insulin a day.  Within about 3 weeks after surgery, my diabetes was gone.  

The one symptom that took a very long time to go away was my heart beating so fast. My resting heart rate was like 110.  It was very scary.  It took like 4 months after surgery for it to slow down. My skin was so bad when I had Cushing's.  I had to take low dose antibiotics for over a year because I would get horrible boils and acne on my face and sties in my eyes if I tried to stop the antibiotics. My skin totally cleared up after surgery.

the first few months after surgery , I didn't feel very good.  It was hard to walk very far and I just felt like I  had the Flu, my body was so sore.

I was not ready to go back to work after 3 months, but my doctor (Endocrinologist) thought it would be good for me.  I had a very stressful job.......but, my supervisors and co-workers were very supportive and I got back into the swing of things fairly well. I had taken 3 months off of work prior to surgery. 

Around 4 months after surgery is when the weight started to melt off me.  It was a beautiful thing! I was so happy! 

I have to tell you that I was very, very ill with this disease, I was literally dying.  I cannot even express how badly I was suffering. My hair was falling out, the diabetes was brutal, 4 blood pressure medicines and it still was not under control, my excess weight was a complete nightmare. I could not even tie my shoes. I coukd not, literally walk three steps without being completely out if breathe. My muscles were terribly weak, I was sweating and my hair was greasy all the time.  The top of my head was on fire. I was exhausted but couldn't sleep.  My ribs felt like they were about to break from the weight on them from my fat. I coukd go on and on about all the symptoms that I had. I never, ever, EVER thought I would feel normal again.

Within a years time, I was feeling so good, I coukd not believe it!

People started saying his great sister looked and wanted to know how Zi lost all the weight. It was, and still us, just about impossible to explain to anyone what Cushing's is. Nobody has ever understood what I went through....except another Cushing's patient and my Dad.  

My Dad was diagnosed with a brain tumor the same week as me. His was cancerous and he died 9 months later. That was the saddest event if my life, by far.  It was devastating. I was very ill, but he was even more ill.

Anyway, it's been 14 years since surgery and I am now 52 years old and feel  pretty darn good!

For a long time after surgery, I kept thinking the tumor was back....that my Cushing's was back.  I was so worried about a recurrence and that I wouldn't be able to 'prove' to my doctors that it was back.

I was getting an MRI every year for a while.  Now, it's like every 3 years. I get my blood and urine tests every year.  

I will say that Cjushing's definitely took a toll on my body.  Especially since I had it for so many years without being diagnosed.  I so wish that I fad known about this disease a lot earlier.  I was completely full blown when diagnosed.....really sick.  I want to mention that this disease also reaps havoc with your emotions and mentaltate.  I was a nervous wreck and very emotional with Cushing's. I would cry so easily.  

There are so many details that I could go into about what I went through....it would be 100 pages long.  If you gave any specific questions, let me know....it is such a personal journey and hard to relay everything. I have never met another Cushing's patient before in person,  but I was on the Internet all the time back in 2003 while waiting for surgery.  It was a Godsend to have the Cushing's-Help forum that I belonged to.  I would read all day and night, trying to understand.  Thank God that others shared their experience and knowledge about this disease.  I would have been completely lost otherwise.

Let me know how you are doing.....how is the testing going and how are you feeling?  You are so young, I'm just so glad that you know about this disease and will not have to suffer undiagnosed for years and years.

I hope you are okay. Thinking if you today. 

Again thank you so much for replying! I am so sorry for the loss of your father but I'm happy that you have had such an successful recovery! I'm hoping mine will work out that well. I currently am trying to schedule with an endocrinologist at the university of Florida but they can't get me in for another two months just for the consultation and I'm struggling emotionally already but this is getting to me. Thank you for being so honest in how terrible the recovery may be, I'm going to prepare for the worst and hope for the best.. Since they are taking so long to schedule me I'm probably going to end up having to have my surgery during the fall semester at my college. I play college volleyball and this is definitely causing some problems, but thank you so much for keeping me in your thoughts!

Hi Karen,

I have my surgery next Monday. Would you have time to correspond with me about your experience or what to expect ?

I'm very scared.

Hi Sarah,

I just got in from work and saw your message.  If you have questions or if I can help you in any way....please feel free to write me.

i think we can correspond privately.....if you want....or Give me your email and we can message each other directly.

i have a second job I am going to this evening.....so, if you don't hear back from me right away.....I will definitely get back to you.

dont be scared......the surgery is very necessary and will help you feel a thousand times Better!

send me private message or send me your email.

hope you are okay

 

Hi Sarah, Please do not be scared.  We are here for you and we are all thinking of you.  It will soon be over and you will be on the road to recovery.  Be patient.  I see that we have all told you our experiences after surgery so you will have some idea what to expect.  Your body will be suffering from a huge withdrawal but will get better.  Do let us know if we can help in any way before or after.  Good Luck.

Thank you,thank you for your story.  It made fell much better.while reading I see myself there except diabetes.  I don't know for how long I have it but last year and a half  has been a  nightmare. I'm 230 pounds now. Look horrible, I don't want to leave the house and meet with friends because the moon face.  I just wish I knew about cushing before ((

Go to Mayos in Rochester I was there two weeks. Got diagnosed had surgery and was on my way home. 

I am two weeks post surgery. I am sorry you fared so badly, KarenNY. I didn't have the traumatic experience you had post surgery. I was in the intensive care unit for a day then I moved to the regular ward for another day then released. I was in the hospital for three days total including the day of surgery. I had a slight headache for less than a hour after I woke from surgery. I have lost 8 pounds in 2 weeks and my hydrocortisone medications have been reduced from 40mg per day to 30mg per day. Immediately after surgery(same day) my blood pressure and blood sugar levels were back to normal. I had the moon face, facial hair, high blood pressure, high sugar level, trunkal obesity and the hump on my upper back. I am in my late 40s so I am not young.

Hi Hoe fantastic to hear you have had such a good recovery, brilliant.  Did you have the tumour on your Pituitary Gland or your Adrenal Gland? It is great to hear about how good the surgery can be and so effective.

Hi there. Did you have headaches, neck aches, or low back pain before surgery? Or even feel like you might pass out often? I just get this heat that runs through my body and I feel like I'm going to pass out.

Hi Sonia,  Muscle aches and excessive sweating are all symptoms of Cushings.  However not everyone has the same symptoms and unless you have been diagnosed with Cushings it may not even be that.  Good luck.

Your reply to Irene is spot on..same exact thing..just horrendous..I had 3 personalities. I named them Jekell and Hyde and the 3rd one was the normal me. Jekell talked all the time. was wired l the tome..couldn't sleep and busy, busy all the time. Manic. Hyde was depressed

and had sleeping sickness where I would sleep for 3 days straight. did not want to talk, and wanted. be alone. I've been dealing with Cushings since 1981, I was 30 and now I'm 68. I have the pituitary surgery in 1989, and 2016..and the tumor is still there as it is in a precarious place, wrapped around the inner cranial artery the tumor can not be operated on, as the surgeon could accidentally pull on the tumor and RIP open my artery, killing me. But I'm doing amazing... pop ok

i just had surgery 3 months ago and i have been so sad because i feel like Im not getting better quick enough . i still have muscle pain, headaches and only lost 30 pounds so far . Thank you for sharing p