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Thyroid UK
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Very High Prolactin - prolactinoma?

My levels are never right so i pushed for a mri just over a year ago and it come back with a 3mm something on pituitary gland, they wanted a re scan 6 months later, but endo hasnt done it, he kept saying its fine to leave, a year on now he has been looking at prolactin levels and they was 1500 10 weeks ago and now at 2000mu/L, so now he is putting me for a urgent MRI, i know its most likely a prolactinoma but in the back of my mind everything i worry about cancer all the time, ive been given some meds to start taking from when i get a mri, does anyone have experience of this x

1 Reply

Hi Dawnuk,

I don't have experience of a prolactinoma... but a prolactinoma is a type of pituitary adenoma and i have one of those. Unlike yours, mine doesn't produce extra hormones. It just sits there minding its own business.

99.9% of pituitary adenomas are non-cancerous, non-scary. But doctors like to scan them at intervals for a few reasons:

- to check they are not pressing on an optic nerve or interfering with anything they shouldn't (mine is very close!)

- to check they are staying the same size and therefore not likely to go colliding into anything.

But oh my, I do remember how terrifying it was waiting for that scan and how scared I was that I would be that 0.01%. I remember standing in the queue at the supermarket trying to process the idea that there's a lump in my head! I decided to make friends with mine and called him Brad, which strikes me as a reasonable name for a pituitary adenoma ;)

In the end mine proved to be reassuringly boring. Brad has been resident in my head for 8 years now and has not got any bigger. Now we wave at him on scans once every two years rather than once a year. I hope you are as lucky!



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