I’ve got a prolactinoma

When I say the above words, people (including nurses and my dentist) give me a strange look. I’m pretty sure that, despite explaining it, few of my friends and family understand it either.

It’s no surprise no one knows what it is; according to Wikipedia (how reliable this is, I can’t be certain), only 14 in 100,000 people have this condition. So what the hell is it, and how does it affect me?

A prolactinoma is a benign tumour on the pituitary gland, this gland is behind your eyes and it secretes hormones.

Hormones are amazing, they can affect your physical and mental health, and yet you’re not even aware that they are there. Until something goes wrong.

Prolactin is a hormone that’s usually only produced in high quantities in pregnant women. It is responsible for making you lactate, i.e. produce milk for your baby.

For some reason, my body started producing high quantities of this hormone (I never have, and never will, be pregnant). Luckily for me, I didn’t start producing milk (some other patients do, including men). My main symptom was that my periods pretty much stopped. This was almost 9 years ago.

After various blood tests, a referral to an endocrinologist (hormone specialist), and an MRI scan, it turned out that I’d produced so much prolactin, that build up had developed into a growth on my pituitary gland: the benign tumour mentioned above. My tumour (back then, it might have grown or shrunk since), was 8mm x 11mm.

This diagnosis freaked me out, but I dealt with it. It’s not life threatening… There are several issues with not treating it, though. If I don’t have periods, I could have early menopause (I was 24 at time of diagnosis). This could lead to brittle bones at a young age. If the tumour grew too big, it could impact my eye sight, or worse case touch my brain and cause a stroke. Plus, my hormones were off-balance and I was having a few mood swings. It needed treating.

So: since then I’ve been taking medication that suppresses the amount of prolactin my body produces. My prolactin level returned to a normal amount and my periods came back (schucks…)

The problem is; the medication that suppresses prolactin also suppresses other hormones. There is some research needed (and with it being a rare condition it’s not really been looking into), but there’s even some evidence to suggest that people on this drug have problems with their immune system.

Sometimes it feels like I get every bug, virus and cold going. And I struggle to fight them off; it takes me a longer time to get over a cold than the average person.

I can’t complain; of all the tumours to get, I’d rather have this one. I’m not seriously ill, I’m lucky, really.

So if you know me, and I’m tired a lot, or cancelling our plans because I’m sick; please understand. It’s not my fault. It’s my slightly dysfunctional body.

If you’ve got a prolactinoma and you have questions, want to share or chat, then feel free to email me, I’m happy to share my experience or answer questions.

4 thoughts on “I’ve got a prolactinoma

  1. krystalyzed says:

    I have one too. 🙂 I was diagnosed in December and though it sucks, I’m glad to find that I’m not alone!

  2. Livi's Crazy World says:

    I was Diagnosed this week officially but I was given Cabergoline 2 weeks ago as my Endocrinologist suspected I had a Pituitary tumour , Cabergoline side effects aren’t terrible but I have been feeling so exhausted , with a dried out sinus and dry mouth..not sure if this normal but hoping it gets better!

    It is so rare and when you try explain it to people they look so shocked…. I don’t think there is enough awareness out there of this particular issue…

    My prolactin was 1900 so I have no clue how long it will take to drop! I have a blood test in 2 weeks so fingers crossed its started going down!

    Did you have any side effects at all from the medication?

    Thanks for writing this post , its nice to be able to come across people with this condition 🙂

    • sarahlouisesmith says:

      Hi Livi, thanks for your comment. Mine was about 1800 and within a month it’d dropped, and two months it was ‘normal’ so it works pretty quickly. If I forget to take it just once, it goes up again! I don’t have any side effects, although I was once asked to up the dosage as part of a trial and that made me feel dizzy. I also have a weakened immune system and I read that it can be because of the cabergoline, although no official research has been done. Nice to meet others with the same condition. All the best to you 🙂

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