Losing Weight after pituitary adenoma surgery

[rochelle32282]

I've been diagnosed with pituitary macroadenoma.  One of the biggest symptoms that is a physical obvious is my rapid weight gain.  In the last year and a half, I've gained almost 100 lbs.  It's humiliating for me to even show myself in public...let alone, knowing that I have no control over the gain and I can try all I want to lose the weight and it does absolutely nothing.  So, my question is this:  How does this added weight come off after surgery?  Does it kind of melt off on it's own? or is it something you have to work off yourself? or BOTH?!!  

[brainpain]

hi rochelle, i am going threw the same thing. i had a pituitary tumor removed in 06. i have gained 30 pnds so far. i cant lose weight either.i stay hungery all the time.i have asked this question a hundred times. i can gain around 5pnds over nite,do you?have you been tested for hypopituitary,cushions ? i have been tested and it comes back low normal.have you had sugery?i had a crainotomy so far im still tumor free.i have tryed to exercise but it make me sick and dizzy. i am very uncomfortable with my body and dont enjoy going out.all my weight gain is in my stomach area,wheres yours?im trying to find the answer to this question to.just wanted to let you know your not alone. best wishes,brainpain

[Zminnza]

They repeated a second pituitary surgery and I feel very sick what can I do and what are the side effects of repeating it

[rumpled]

What type of pituitary tumor?

Weight loss and treatments all depend heavily on the type of tumor... so there is no one size fits all.

If you have a prolactinoma, your endo - which should be at a pituitary center, not a normal endo that treats diabetes - would normally try meds first.

They should also have you in at a neuro - optho to get an eye check as vision loss is often not regained so you really need to get on top of this.

Get copies of everything. From the vision loss I can guess your tumor is growing upward, and you need to determine even how much of your tumor is operable. You need a skilled pituitary surgeon not just any surgeon or you can actually lose more of your sight. You really need a top team on your side.

I know I am not telling you all sorts of fun things - but you need a good surgeon for the best outcome post op, then the hormones and all have to managed to get back to the new normal. You will require monitoring forever.

I am currently sick - lung thing - so not checking in as often as usual...

[hannahvieira]

I was just diagnosed last Friday with a pituitary tumor. Mine is measuring a little under 2cm around 1.9cm. I'm 21 with a tumor. It  definitely makes for a fun college endeavor. I've lost total vision in one eye. My tumor is pressing on my optic nerve. Have you all had surgery to remove your tumors? I haven't decided yet what I want to do. I meet with a neurosurgeon next week and an Endocrinologist.

Also any new verdicts on weight loss after the surgery? I've gained about 60 pounds over the past two years. I'm hoping once my hormones are regulating "normal" again I may have luck with some weight loss. It's been such a struggle. Any insights? This is definitely not how I wanted to start my senior year of college.
Thanks in advance!

[rumpled]

Your tumor needs an expert.  You need a pituitary center.  I would also hope that they have determine the type of tumor which may be non-functioning given the size.

I would read up and make sure you have a super experience surgeon. Get copies of everything.

[simplyme1957]

I have recently been diagnosed with a macroadenoma 1.6 x 1.5 x 3.2. they haven't yet talked surgery... although my optometrist who found it wants it out because it's playing with my vision.  But I was hoping for better news on losing weight if I did have the surgery.

[rumpled]

Same reply as above - it can depend on replacements. Also what type of tumor.
I know I had a recurrence. I am assuming you are on a monitoring program.

[Mawkin]

I had a pitutarymacroedenoma removed successfully two years back but have lost around 10 KG of weight ..my appetite is normal and no other conditions persist but I am not able to see the reason of such loss of weight

[rumpled]

What replacements are you on?

What type of tumor did  you have? Some of the emotional issues can be related directly to the type of tumor - prolactinomas and Cushing's cause a lot of depression for example.

Also the replacements are not perfect - so weight gain caused by the abnormalities and now the replacements not fitting in perfectly are a constant issue for us all.

[Aspenraen]

I'm in the same boat. I wish I knew how to help us both. I now have a residual? tumor and go through periods of various symptoms happening all at once and then it will stop as quick as it started. Worse than the weight gain for me is the periods of extreme hatred of life and anger. The only thing that keeps me sane is that I have learned to tell myself "it will pass".

[RW614]

I too have often felt the way you do.  I had my fist pit surgery in 2011 and had another in 2017.  With my doctors supervision I've cut back on the steroids which help.  Also my naturopath has put me on 5-HTP for mood and a natural supplement for ADHD.  I read a great study posted by a neurosurgeon who said the symptoms of not being able to concentrate are directly related to the surgery.  I also meditate and use EFT (emotion freedom technique) to help with the stress of it all.  I was able to loose weight following the first surgery but am having a much harder time this time around.  Find a good naturopath.  This is really the only thing that helped me.  I also take a DHEA supplement (25mg).  the naturopath had me take it after testing me for it and finding I had NONE.  My endo never tested for it.  It definitely helps with energy levels.  Lastly I take an adrenal supplement by Integrative Therapeutics.    I hope something in here helps you.  I went through hell with the mood swings, anger, crying, finding no purpose in living  etc for years.  I hate for anyone else to go through it.  This is the link to the article I read:  neuro.psychiatryonline.org/doi/full/10.1176/jnp.17.2.159  or do a search for Pituitary Surgery and Apathy and you should find the article called Apathy and Pituitary Disease: It Has Nothing to Do With Depression

[tahliastar]

A related discussion, weight gain sending me crazey was started.

[Kyrakyra]

Haven't had surgery on pituitary yet. But I have the opposite problem. I am ashamed won't even go swimming, something I love because I look like skelator. From he-man. I know not the same but in a way I feel yourr pain. I look in the mirror and do not like it at all no curves. I hope that you  are having your hormones monitored closely. They tell me I will gain weight but it has been two years and nothing yet. I just take the pills and hormones get my blood work and hope they will give me an answer. I pray you will have better results. You are not alone perhaps you can go to a support group. I find this to be helpful I can and talk others who understand. on either extreme. This has helped me some. I still won't give up trying to gain weight.