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