Prolactinoma advice

[C1umsyGiraffe]

Hello!

I recently got 21 day blood results back and GP. has said I've got high prolactin (907) so she is referring me to the endocrinologist to find out why. She said it's nothing to worry about and from my googling it seems to just be able to be sorted with medication?

Just wondering if anyone had a similar experience and what should I expect to happen next? Would love to hear some success stories!

Thanks!

Hi @C1umsyGiraffe

I’m a little bit ahead of you but in a very similar situation! I had consistently high prolactin - around 800 - last year. I was referred on to endocrinology and have subsequently had a cannulated blood test at hospital - this is basically a 30min blood test taken by cannula in your arm. The idea I think is that you’re more relaxed (ha!) so you won’t get an incorrect high prolactin reading due to stress. As my reading was still high I went for an MRI scan which has confirmed I have a small prolactinoma and am now just waiting for my appointment to get it sorted.

It’s all a little bit scary, but in some ways a relief as we’ve been ttc for such a long time the thought that they might be able to solve the issue is a weight off my mind.

As I understand it in most cases they can solve it with medication. I’d also be really interested if anyone has any success stories with this!

Hello to you both! I have had prolactinoma diagnosis since 2005 when I was 21, I am now 36. My initial symptoms were leaking milk from breasts and my periods stopped completely (I wasn’t pregnant). I had a blood test initially which confirmed high prolactin and then MRI to determine the size of the prolactimoma, which was micro and could be treated with medication. I was then prescribed cabergoline to be taken twice a week which completely resolved all my symptoms and my periods came back as normal.

My DH and I started trying for children in 2018 and so I stopped taking my medication. It took around 4 months to become pregnant and DD1 was born July 2019. DD2 was born in January. During both pregnancies I have been under the care of a specialist endocrinologist who really doesn’t do anything unless there are any worrying changes like headaches or problems with vision (which I haven’t had fortunately).

I have had several MRI scans to confirm size the prolactinoma over the years and it has never gotten any bigger. The last MRI in 2017 indicated that the medication was actually shrinking it. I have been without medication now since we started ttc in 2018 and have successfully breastfed without problems. My endocrinologist said that there might be issues with my periods returning and breast milk production stopping once I stop breastfeeding but I had no issues and became pregnant again with DD2 very quickly (much more quickly than we anticipated) and again am breastfeeding with no issues. My endocrinologist has recommended restarting cabergoline as soon as I stop breastfeeding this time round because I have now been without medication for nearly three years.

My treatment has always been easy to manage, I have an MRI every few years to see the size of the prolactinoma to make sure it isn’t getting bigger and other than that I have one checkup a year with the endocrinologist who reviews my prolactin levels and medication. It has never really been an issue so please don’t worry about it. I have to set a reminder to take my pill twice a week otherwise I would definitely forget but other than that I go about my life as normal.

I hope everything goes well for you both!

@Parsleyrose thank you so much! It's good to know what might be coming next. I feel exactly the same, at least if this is the issue then it seems to be easy to solve with medication. How long have you been ttc?

@Yellowred that's amazing to hear! Congratulations on your beautiful babies, thank you for the success story. I'd be happy to take a pill twice a week! Thank you so much, helped me to relax about it so much so thanks!

@Yellowred thanks for sharing your experience - that’s really good to hear! Did you have any side effects with the cabergoline? I’ve read that it can make you really nauseous. And actually weirdly that’s the same medicine the vet prescribed my dog when she was having phantom pregnancies and it made her reeeally nauseous - it took her about a year to get back on her food! So that’s made me a bit worried

@C1umsyGiraffe we’ve been ttc now for nearly 18 months. I first went to the GP about it last summer so it’s taken a long time to get to this stage. I haven’t really had any symptoms of the high prolactin - always had a really regular period. Last summer my GP told me to stop tracking everything and just relax but that had no effect whatsoever. I’ve just started tracking ovulation again and it seems like I ovulate really late in my cycle and have a short luteal phase so I’m wondering if that’s caused by the high prolactin. How long have you been ttc? It would be great to stay in touch as we’re sort of going through this at the same time!

@Parsleyrose fortunately no I had no side effects at all. The dose for prolactinoma is really low so maybe that’s why? I think there’s more than one medication though, so if you had a bad time with cabergoline they’d probably swap you to something else.

@Parsleyrose I'm so sorry for the late reply I completely lost it!

Gosh that has taken you a while to get to this point - sorry! I had my blood test at the hospital today, hopefully get the results soon. I have a short luteal phase too so that would make sense! Have you got any updates?

I hate the "just relax" thing! My friend said it to me and I know she has the best intentions but she conceived on the first month of trying so she really doesn't understand.

I would absolutely love to stay in touch! So nice to have some going through the same thing and be able to talk about it.

@C1umsyGiraffe no worries, it’s good to hear from you! Have you had your results back from the hospital blood test?

I’ve just had my appointment with endocrinology and I’m on a very low dose of cabergoline. They were in two minds over whether to give me medication as the prolactinoma is so small and my prolactin levels of around 800 are only just above the threshold. I’m pleased they have though - we’ve been ttc for such a long time I want to try everything before we do IVF.

Yeah it’s super frustrating when people say just relax (I know they’re only trying to be helpful but uggghh). I actually feel more relaxed when I’m tracking things and know what’s going on.

I’ve been referred to a fertility specialist at the same time and they are very keen for me to start ivf soon as I have borderline fsh too. So this really feels like our last chance to try and get pregnant naturally