should i ask to see an endocrinologist team

should i ask to see an endocrinologist team

Postby member_33272 » Sat Mar 03, 2012 12:31 pm

hi everyone. i was diagnosed with a prolactinoma (macro adonema) 4 years ago. my periods stopped suddenly 12 years ago and i put on three stone in weight but was told it was early menopause.after eight years of no periods my breasts started leaking milk. i went to a different doctor who did blood tests and my prolactin levels were sky high. i was sent for an mri which confirmed the tumor. i have since been attending a 'general medical consultant' and getting scans every year. i take cabergoline twice a week but there has been no shrinkage of the tumor. when i first started taking the tablets i lost about a stone and a half but recently i have put it all back on. my periods came back soon after starting cabergoline but the 8 years without them has left me with osteoporosis in my spine. my spine is cumbling, my discs have dried out and some are bulging. it is agony.
having read some of the forums, everyone else seems to go to specialist endocrinologist teams. i have never heard about them before. i keep telling my 'general medical consultant' that i have severe headaches and sharp pains behind my right eye but he always tells me it has n othing to with the tumor...........i just might need my eyes tested, but on reading some posts i see this is quite common with the condition. i feel as though he doesnt know enough about the condition and i learn more from this site than i have done from him in the past 4 years. i go to see him later this month and was thinking about asking him if i could see an endocrinologist. what do you think? your input would be very much appreciated. i feel lost.
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Re: should i ask to see an endocrinologist team

Postby Mgh » Sun Apr 22, 2012 3:39 pm

For some reason I have not read your post before today, sorry. As you have already had a scan I think it would be advisable to have your eyes tested now and have a visual field test as part of that.
I had a pituitary macro adenoma which turned out to be a prolactinoma. It was not until I went to a very patient ophthalmologist who listened to all my symptoms that I was taken seriously. The visual field test indicated a problem so I had an MRI scan which showed that the optic nerve was compressed. The damage was quite severe so I was referred to a neurosurgeon.
If you are referred to an endocrinologist, try to ensure they are experienced in pituitary conditions. I also saw an endocrinologist pre surgery but unfortunately he was not very familiar with pituitary conditions. Eventually I was referred to a specialist pituitary team clinic and now a year later I am on all the drugs incl. hydrocortisone, levothyroxine, growth hormone. They are not quite balanced yet but getting there. I had a great variety of symptoms over many years which, in retrospect, one can attribute to the tumour affecting the functioning of the pituitary, and laterally, pressure on the optic nerve.
Hope it all works out for you.
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