Acromegaly stories: 
​​​​​​​Meet Jessica

It was in the autumn of 2020 when I went out for a long muddy walk in my winter walking boots I had spent a small fortune on two years previously that the pieces finally fell together and I realised I was suffering with acromegaly. I managed 5 miles of a ten mile walk before my feet were so painful and blistered that I had to stop...my feet had grown out of my walking boots! Not something that you expect in adulthood.  

Once the pituitary tumour was diagnosed, I saw an endocrinologist, neurosurgeon and ophthalmologist - the biggest shock to be honest was that my vision had been affected without me realising it. The tumour pressing on my optic nerve meant I could now no longer see things in my peripheral vision. My vision was only just good enough to allow me to continue driving!

The initial medical treatments made little difference to my symptoms so quickly I had an operation to remove as much as possible of the tumour. As it was sat in a difficult part of the brain to access not all of the tumour could be removed, however I did feel significantly better. 

Over the last eighteen months I have had a couple of different medical treatments and also gamma knife radiotherapy and some of my symptoms have improved. I look almost back to my normal self and no longer snore! However, my growth hormone levels are still raised and I still have symptoms.

How do you feel about your diagnosis? 
Things are significantly better 18 months post diagnosis; I feel positive and am looking forward to trying new treatments to get on top of the symptoms I remain troubled with.
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Getting the correct diagnosis and treatment has meant I no longer feel old and blame myself for all the vague but debilitating symptoms I have lived with! I have been able to understand what is going on in my body to cause all these changes and begin to work out how to cope better. I have recognised that some days are more energy filled than others and adapt where I can.   

​​​​​​​My family have been supportive and amazing in every way and encourage me to rest when I need it and not to feel guilty when I do. I completed ‘Couch to 5K’ last summer and ran my first 10K race in the autumn. On days when I struggle to run I get out for long walks with our gorgeous little dog and to keep me busy when I am exhausted I have taken up crocheting! ​​​​​​

​​​​​​​Do you have any advice for others that might think they have acromegaly symptoms? How would you encourage them to act on any differences they start to notice? 
As a patient and a GP, I would encourage anyone who notices they are suffering with changes like the ones I saw to chat with their doctor and tell them their concerns. Acromegaly and other pituitary disorders are rare and the average GP will only see a few cases in their career. The diagnosis might not be right at the front of their mind when they see you!