What is your acromegaly story? Let's share!


Patients Acromegaly

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Posted on

Hello everyone,

How are you today? emoticon cute

I thought I would open this discussion so that we can get to know one another better!

So, what is your acromegaly story? When and how were you diagnosed? Did you receive your diagnosis right away or did it take multiple doctors to diagnose it? What treatments have you tried and how are you doing today? Do you have any advice to share with someone newly diagnosed

‍Feel free to share your story, experiences or advice with us here!

Take care,

Beginning of the discussion - 7/23/20

What is your acromegaly story? Let's share!

Posted on

@Courtney_J Hi Courtney, I had acromegaly a number of years before I saw the signs. It wasn't until I couldn't put my rings on anymore that I really knew there was a problem. I ended up getting diagnosed pretty quickly, after a blood test for growth hormone, a suppression test and then an MRI to see the ptiuitary tumour. I've really struggled with my body image with all of this, looking at old photos of myself can make me burst into tears because I don't feel like I'm who I used to be anymore. I couldn't have an operation at the time so I've been doing radiation and sandostatin to control the GH. I've seen some improvement but I'm hoping to convince my doctor to do surgery eventually.