Has anyone been tested for or diagnosed with prolactinoma?

It's a type of benign tumour on the pituitary gland. I've had an increase in my migraines since Jan from one a month to over one a week, and because of other hormonal symptoms I have, my GP thinks it's worth testing for this condition as it can have an impact on headaches. I'm interested to hear other people's experiences. Thanks.

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  • Hi Monica,

    Sorry to hear about your migraines.

    This may sound silly but I'm not sure if I've been tested for it or not. I may have had similar symptoms though so I'm interested to learn about your experience. What kind of hormonal symptoms have you been getting if you don't mind me asking? What kind of tests is the GP going to do?

    I've been getting increasingly bad migraines over the last 10-20 years. Recently I've been getting them every day. About 5 years ago I started getting hormonal symptoms. My GP did some blood tests which I think were to assess my pituitary function and whether a tumour was indicated. The blood tests showed I had raised prolactin and also an underactive thyroid.

    I was referred to an endocrinologist who said that domperidone which I take for migraine sickness can cause raised prolactin levels so he decided that was the cause. This seemed plausible but I've since had a break from taking domperidone for several months and the problem has continued.

    Is this similar to your situation?

    Good luck

    Devette x

  • Hi Devette,

    Thanks for your reply, sorry to hear about your migraines too, how awful that you have been getting them every day, how do you cope?

    The symptom I have that made the doctor think it was this is discharge from my breasts. I've had it for about 10 years and had it checked out at the time it started and all was fine, but can't remember if that involved blood tests or not. It only happens at night and if I am ill (migraine or cold/flu). But my reason for seeing the doctor in the first place is the increase in my migraines since Jan when I had a bad bout of flu lasting several weeks, and the ongoing tiredness I have since then too. I notice that fatigue can be a rare effect of prolactinomas. I also take domperidone, but only in the last 2 years. What symptoms are you experiencing?

    I am going for blood tests first, which I'm having done on Friday, sounds like the tests you had. I've read that there are some medications you can take if you do have raised prolactin were you offered these? Maybe that's only if you have a tumour too - did you have any type of brain scan? I found some info here that may be helpful: patient.co.uk/health/Prolac...

    I've also just been tested for an underactive thyroid as it runs in my family and I was hoping I had it as it could be responsible for the fatigue, but apparently it was normal, sounds awful but I was slightly disappointed!

    Good luck to you too

    MonicaG

  • Hi MonicaG,

    My symptoms are similar to yours but the galactorrhoea is always there. It does vary but there doesn't seem to be a particular reason why.

    I was also diagnosed with aggressive rheumatoid arthritis about a year ago which is another autoimmune condition and I don't know whether the exhaustion, muscle aches, brain fog etc (too many symptoms to mention...) are due to RA, migraines or thyroid! I know how frustrating it is to know something is not right but not be able to get a diagnosis/treatment.

    The endocrinologist did say there was a medication which could stop the milk production so perhaps you could try that. He said I would need to stop the domperidone though or it would just start again. I had an MRI brain scan via the headache clinic at some point which they said was normal.

    Have you had the results of any of your tests yet?

    Take care,

    Devette

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