After being told by Oxford lead endocrine specialist that there was pretty much nothing more they could do for me. I have been given two new referrals... one for a chronic fatigue specialist and one for a neurologist! This is brilliant news as I know more can be done for me. Just because biochemically I should be 'normal'. I know I am not and the brain is more complicated than just getting your hormone levels right. I had to fight for this though and do research of my own, but it's been like that since I first became ill with Cushings and had to pretty much self diagnose myself as the local GP admitted 'he was sorry, but he did not know what was wrong with me'. 2yrs later and a lot of heartache and suffering, and personal research, I managed to persaude them I needed to see an endocrine specialist even if it was just for suspected polycystic ovaries at the time.... this led to more tests and a final diagnosis of the tumour causing me cushings which would of course eventually kill me. Brilliant.
The surgery which has cured me of the fatal disease unfortunately has given me another problem; my pituitary gland is non-functioning. Apparently there is no research in this country for people in my situation whose pituitaries don't work but have to just accept that they must just get on with life and drag themselves through every day. I refuse to accept this. I'm too young to give up, hence pestering my specialists and doctors to not give up on me either. I will write on this blog how I get on in my future appointments, I haven't received details yet and don't expect anything for at least 3 months or more knowing the typical wait times!
This is an interesting article to read: http://neuro.psychiatryonline.org/cgi/content/full/17/2/159
I will also at some point this year start Cognitive Behavioural Therapy and possibly have a neuropsychological assessment. I beleive that our mental state very much affects our physical state so I am going to get all the help I can and see if that doesn't troubleshoot a few problems! Ha. I shall not be defeated.
A tiny group of cells that changed my world
Click on the image to find out about what the Pituitary Gland does
About Me
- Lottie4979
- I'm in my 30's, which to me sounds very odd. I only feel like I'm in my 20's and definitely not a grown up. I have spent the last 7 years battling with my health; firstly spending 2 years getting a diagnosis for a tumour on my pituitary gland which was causing Cushings Disease; then spending the rest of my life dealing with a pituitary gland that doesn't work. However, I have a fantastic family and an amazing boyfriend who I live with and adore - they keep me going and inspire me to try to make the most of life and my life in general.
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