It’s Official – ‘Cured’ of Acromegaly

Last week I went for a follow-up appointment to discuss tests and an MRI scan I’d had on September 17th (some seven months after surgery).

The OGTT test showed suppression of GH to less than the sensitivity of the assay (<0.3 ug/ml), and my IGF-1 was bang in normal range at 180 ug/ml. The MRI scan showed a clearly distinct healthy stalk to the pituitary gland, no compression of the optic nerve. There was a little material below the pituitary fossa, which is down to the packing used to seal up the little hole just below the pituitary. My other blood test values are normal too. The professor was delighted, and indeed so were we.

So after that lot, I’ve got wonderful news: I’m officially totally in remission (or ‘cured’) of acromegaly.

The test criteria are so strict, this essentially means that this is in all likelihood the end of my difficulties with acromegaly. It’s not likely to recur, so I can move on now and get on in improving my general health, and grab life by it’s horns once again, and hopefully “make a difference” in some way to help others. It’s the combination of tests, these low limits, and the timing that gives this level of assurance that I’ve been so very much been waiting for.

My wife and I enjoyed a bottle of champagne that night to celebrate, as it is reason indeed to be incredibly delighted.

On Saturday, I celebrated in my own little way by cycling on my new bike from Warland (on the way to Todmorden) to Manchester Picadilli. It was a cycle of some twenty miles, taking about two hours. Ironically there were people collecting for The Christie, so I told one of them that what they were collecting for was indeed very worthwhile, as indeed I was one of their patients who had just received the news of my ‘cure’.  If you’d like to donate to Christies:

Indeed, one of my inspirations in starting this blog in the first place was reading one by a lad called Jason who has acromegaly. He mentioned his cycling in his blog, and I was amazed at the time, that despite his condition he was doing so well and even mountain biking. Hopefully I can follow in his (rather large) footsteps!

Thank you to everybody who has helped me in this two year journey, you all know who you are.

I especially wish to thank everyone who prayed for me, my wife, my family, especially Carys (my sister for spotting my condition), Dr Simon de Vial (my great GP who took my big shoes seriously), Susannah Rowles (my first endocrinologist who established the diagnosis, and went the extra mile including answering my many questions),   Sister Bernadette James (who saw my bottom regularly every month for my injections), Professor Peter Trainer (my brilliant red-socked endocrinologist, who has had to put up with my seemingly endless questions and answered each one with cheerful assurance), Kanna Gnanalingham (my steady-handed neurosurgeon, and the proud owner of one of my funny T-shirts and for having an amazing Scrabble-beating surname), Margaret Roberts (my very patient Acromegaly specialist who’s a real gem), Steve McGlynn (who raised my spirits when I was a medical guinea pig, along with Vinny), Dr Pravine Partha (for his very caring manner in keeping me calm during the rougher parts of my recovery), and all the nurses and support staff at The Christie, Salford Royal Hospital. Finally, and Minden Family Practice. I wish to thank you, my reader, for reading this! Phew!

The majority of us diagnosed have a ‘biochemical cure’ with treatment. So, if you have recently been diagnosed with acromegaly, then take heart. As long as there is still faith, there is hope. Just don’t panic, take each test and procedure one step at a time. There is life after diagnosis! Whoohoo!!