Understanding Your Endo

Establishing an open and honest relationship with your endocrinologist is an important part of optimizing your acromegaly treatment and living your best life. But while you and your endocrinologist are both striving for the same goal, sometimes it can feel like you’re playing on opposite teams.

If this sounds familiar, take a moment to read the following piece, which outlines the perspective of an endocrinologist treating acromegaly.

When it comes to treatment, your endocrinologist is primarily focused on two main things:

1. The tumour: when it’s large, it can cause structural problems within the pituitary gland

2. The metabolic effects (of having high levels of growth hormone and IGF-1) including high blood pressure, diabetes and various other problems which can lead to a shortened life expectancy

This doesn’t mean your endocrinologist is ignorant of the various things happening in your life. On the contrary, your endocrinologist wants to get your hormone levels under control so you can focus on what’s most important in life, like family, friends, hopes and dreams.

Despite what you may think, your endocrinologist understands:

No two patients are the same. There is no cookie cutter example of an acromegaly patient, and every person handles the disease in his or her own unique way. Moreover, the physical changes that accompany an acromegaly diagnosis will be more difficult for some people to handle than for others. Gender and age can factor into this.

For instance, young women might have a tougher time dealing with the physical changes than older men, simply because they’re wired very differently, they’re at different points in their lives and society treats them in completely different ways.

Acromegaly is a lifelong condition. Even after the tumour is removed, growth hormones might remain elevated. This means that individuals will need to be treated on an ongoing basis for a chronic disease, just as diabetes and high blood pressure are treated chronically. This can be a very difficult reality for people to accept.

Individuals will likely require psychological support. Due to the nature of acromegaly, a chronic and potentially disfiguring condition, most people require some form of psychotherapy. Your endocrinologist encourages such support, and will be willing to refer you to a professional.

Acromegaly therapy isn’t easy. It’s not simply a matter of taking a pill once a day. It’s an expensive, complicated treatment, which can make treatment adherence all the more difficult.

Bottom-line: Although your endocrinologist might appear removed or disinterested, it’s because they’re trained to tackle the root of the problem in order to enhance your quality and quantity of life. Ultimately, your endocrinologist understands that you’re confronting a very difficult and potentially devastating diagnosis and they want to help as best they can, by finding the right course of treatment and referring you to the best support available.

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Check out the true-2-me guest editorial on treatment Considerations for Acromegaly

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