Who is in charge of your treatment? Are you being looked after by a specialist? I thought there was an eye test I think it's called a visual field test that you have done. Have you had this?
My endocrinologist ... but he is unsure of cause .... and has not referred me to anyone .... I was at the GP surgery when I blacked out ... but still I seem to be lost in the system
I suggest you get a referral to one of the University Hospitals. They seem to have the expertise in this condition. Whereabouts in the country are you?
I researched this because it was initially thought I had a pituitary adenoma. The London Hospitals seem excellent. The hospitals that are under the Imperial Centre for Endocrinology - St Mary's, Charing Cross or Hammersmith all good.
The National hospital for Neurology and Neurosurgery at Queens Square has excellent credentials. The Top Doctors Guide 2013 in Tatler puts several consultants that work in this hospital in that list.
Oxford University Hospitals NHS Trust has a good pituitary department as does Addenbrookes in Cambridge.
I would ask for a referral to one of the above hospitals. You can be referred to whatever hospital you want to go to. I wanted the best possible treatment available and I narrowed it down to these.
I've only just read your question from last month, but hope you have managed to find an end to help. I had a pit. microadenoma way back, surgery in 76 and radiotherapy in 79. Was clear of tumour but on a routine annual check was picked up with hyperthyroidism, autoimmune Graves though, so nothing to with pit! RAI left me hypothy but having had more than 30 years longer than on initial pituitary prognosis it's not so bad!
Good luck with finding an endo; Professor Richard Ross at the Royal Hallamshire is really good - he's seeing me annually since I developed a need for growth hormone replacement. It's worth the drive to Sheffield.
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