What is your acromegaly story? Let's share!

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 radiotherapy and sandostatin to control the GH. I've seen some improvement but I'm hoping to convince my doctor to do surgery eventually.

Hi everyone, here’s my story:

About a year ago, I started to notice that something wasn’t quite right but it wasn’t obvious what. I was sweating a lot more than I would usually, started getting headaches more frequently and had more frequent muscle/joint complaints. I also knew that my facial features were changing too but because of my age (24) I and others just attributed this to ‘development’. I have also always suffered to some degree with anxiety and a lot of the symptoms I was experiencing (sweating, muscle/joint discomfort and headaches) were too easily attributable to anxiety. All the GP consultations I had about these symptoms continually pointed to Generalised Anxiety and I was convinced that what I was experiencing was merely in the head (pardon the pun!). 

Several months went past and from May this year I started noticing my vision deteriorate and my feet considerably enlarge (SO random - I had a digital appointment with a podiatrist who put it down to Lockdown and not wearing shoes). Out of everything my vision changes were bothering me a lot so I saw an Opthamologist in June and was referred for an MRI - this is when my Macroadenoma was diagnosed and Active Acromegaly from follow up blood tests. Within 3 weeks,  I had my surgery and am now awaiting a follow up MRI and consultation. Even in the 6 weeks since my surgery, I have noticed my face and body looking less “puffy”, sweating decreased, headaches almost gone and some improvement in joint/muscle pain - that’s something right! Keeping my fingers crossed that I no longer have active acromegaly but accept the fact that medication might be needed going forward. 

Excellent news on positive signs so soon after surgery.  I had my adenoma removed 30/12 /2019 . My hands are certainly smaller and the head aches have stopped. Still struggling to loose weight as I was on steroids for 7 months. I am having monthly injections as a treatment moving forward but life is much better now. 

Keep on making progress and keep positive  

hi everyone, my daughter as acromegaly. She is 20 years old and currently having monthly injections of olatuton, she's due to have surgery in the new year.

Back in February if this year she banged her head and went to hospital for concussion, she had a ct scan and they found her pituitary gland was larger than it should be. From there she was sent to see a specialist, after numerous tests and mri she was diagnosed with acromegaly. She was also diagnosed with diabetes.

We've been told her tumour is an irregular shape and measures 2.3cm by 1.8cm by 1.6cm, the surgeon we recently spoke to said he's unsure if he can remove it all because it's so close to an artery.

She started the injections last month to shrink the tumour and decrease the release of growth hormones. She was fine after the first injection but as been poorly after the second, sickness and diarrhoea and tummy pains, not feeling hungry and generally drained.

Originally we were told they planned to operate in January but now the surgeon said it could be Feb or March.