Does brain tumor surgery often lead to hypothalamic obesity?

Question

Hi doctor,

I am 28 years old and had craniopharyngioma surgery two years ago. Since then, I have gained 45 pounds, despite eating clean and trying everything I can to manage my weight. My leptin levels are very high (78 ng/mL), and although my TSH is within the normal range, I continue to feel sluggish and constantly hungry.

My doctor mentioned that this may be hypothalamic obesity.

Is this a common condition in women after craniopharyngioma surgery?
Are there any treatments or clinical trials currently available that I should be aware of?

Please help me.

Answer 1

Hello,

Welcome to icliniq.com.

I understand your concern.

I am so sorry you are going through this; my heart truly goes out to you. That sounds incredibly frustrating, especially after everything you have already endured. Yes, hypothalamic obesity is unfortunately quite common after craniopharyngioma surgery, particularly in young women like yourself.

The hypothalamus regulates hunger, metabolism, and feelings of fullness. When it is damaged, it can cause exactly what you are experiencing: persistent hunger, fatigue, and weight gain, despite your best efforts. This is not a failure of willpower; it is a disruption in your brain’s signaling.

Treatment is challenging but continuing to evolve:

GLP-1 agonists (such as Semaglutide) have shown promise in reducing hunger.
Metformin may help address insulin resistance.
Setmelanotide, typically used for rare genetic forms of obesity, is currently being explored in trials for hypothalamic obesity.
Diazoxide may help in reducing excessive appetite in some cases.

Please do not lose hope. Talk to your endocrinologist about the growth of your Hype Registry or available clinical trials at major centers like NIH (National Institutes of Health) or NORD (National Organization for Rare Disorders). We will find what works; you are not alone in this fight.

I hope this answer helps you.