This is a little out of the ordinary for me. I’m writing about a topic that usually sends me into ‘emu mode’ when it’s brought up. But I think it’s time for me to write about something I’ve been living with for 18 months now.
I’d like to introduce you all to Paul. Paul is my prolactinoma. Which means that Paul is the BENIGN tumour/adenoma/growth that I have on my pituitary gland. I definitely don’t like to admit it, but he’s had a big influence on my life recently.
I’m mostly writing this post to help raise awareness about pituitary conditions. I suppose I’m also writing it as a ‘coming to terms’ with things step? I’m not sure.
So, Paul. Paul is a macroprolactinoma. Which means he’s in the bigger bracket in terms of pituitary tumours, not really that good. Bigger ones (macroprolactinomas) can occasionally interfere with eyesight as the optical nerves sit close to the pituitary gland in the brain. When I was first diagnosed, he measured 1.3cm by 1.1cm. The pituitary gland is really important in terms of producing and regulating various hormones. These include; growth hormones, puberty hormones (LSH, LH, testosterone etc.), thyroid stimulating hormone, and prolactin. Prolactin is the important one.
Prolactin is usually associated with pregnancy. It helps with milk production in lactating mothers and high levels interfere with the glands’ production of LSH and LH. These are essential for maintaining the menstrual cycle.
So what happens when you have a prolactinoma? In my case, I was a fair way into my teens and hadn’t started my period yet. I was also really worn out and run down, and carrying a little extra weight (there’s no evidence that untreated prolactinomas cause weight gain, but I definitely lost some once I’d been put on my medication.) My mum and I decided that I should go to the GP to have some blood tests. We had no idea what we were looking for, or expecting, but my bloods came back with exceptionally high levels of prolactin. By high I mean that ‘normal’ levels might be 50-200, mine was closer to 5000. Cue more blood tests to check for definite, and then I was sent for an MRI and lots of different tests that (I think) included looking at my adrenal function, bone density, eye tests, and a heart cardiogram. They’re all to do with the side effects of having a prolactinoma.
The MRI showed that I had a significant growth on my pituitary gland and the answer was found. Luckily, prolactinomas are relatively easy to treat, surgery is only necessary in rare and severe cases, so I take a tablet that inhibits the production of prolactin. The problem with prolactinomas is that the excessive production of prolactin feeds the tumour, causing the tumour to produce more prolactin, and so on.
It’s been quite a long, frustrating journey. I’ve had more blood tests than I can keep track of, 3 MRIs and lots of visits to different doctors. I’m finally at a stable stage of my treatment. I’ve been told I don’t need any more MRIs for a while (thank god!), just keep taking my medication, keep having blood tests, and in 3-5 years I might be able to come off my medication. However, my journey unfortunately doesn’t stop there. Because when I decide I want children it all has to start again. As I mentioned, prolactin is associated with milk production in mothers. This means that if/when I get pregnant my prolactin will naturally need to rise, I’ll have to come off my meds and the extra prolactin being produced could cause trouble with Paul again. That’s in the future though.
For now, I’m healthy, I’m happy, and I hope that I can raise awareness of pituitary conditions with this post. If you have any questions, feel free to drop me a note on the Contact Me page. For more information, The Pituitary Foundation is a really useful reference: http://www.pituitary.org.uk