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My Experience of Pituitary Tumour and Pregnancy

I’ve already written about my experience of hypermobility and pregnancy (and birth!), so it feels like time to write about my experience with my pituitary tumour (pituitary adenoma).

My Experience of Pituitary Tumour And Pregnancy

Before trying for a baby

My husband and I went to talk to my endocrinologists about the possibility of trying for a baby over a year before we actually wanted to start trying (we had a wedding in between!). And it was just as well we did, because there was a lot of planning involved…

At the time, I was taking a medication called Somatuline Autogel (lanreotide) for my pituitary adenoma. There’s no data on its safeness (or otherwise) in pregnancy, and in fact it isn’t even technically licensed for my condition. I have a pituitary tumour which produces thyroid stimulating hormone (TSHoma), and they’re so rare that there actually isn’t any medication licensed for the condition. However, I’ve taken lanreotide on-and-off for nearly ten years, and fortunately it always worked well to control my symptoms.

But because it’s not known how safe lanreotide is in pregnancy, my doctors were keen to see whether I could manage without the medication during a pregnancy – or whether my thyroid levels would start going up again. So I agreed to do a trial period off the medication. All went well for a couple of months, and then I could feel my symptoms coming back, and blood tests confirmed that my thyroid levels had risen again. So, a new plan was needed.

My doctors then suggested trying cabergoline, a drug that’s used for a different kind of pituitary adenoma called a prolactinoma. They estimated to me that, based on their previous experience, there was about a one in five chance of it working for my tumour as well. And although cabergoline is not licensed for use in pregnancy, there have been more case studies etc. of women using it in pregnancy, so my endocrinologists thought it would be a better bet than lanreotide… If it worked for me.

So I have it a go… And it worked! To my surprise, it was just as good as lanreotide, if not better because it’s much more convenient. With cabergoline, I take two tablets per week (weird schedule, I know), whereas with the Somatuline Autogel it was an injection once a month which my husband had to do, and we had to keep the injections refrigerated beforehand. Plus, with Somatuline, because it messes with the function of your gallbladder, I had to eat an extremely low fat diet for 5 days out of each month, which could be a real pain when we were out and about. So not having to do that was a real bonus!

During Pregnancy

During the course of my pregnancy, I had to have blood tests once a month to check on my thyroid levels. Fortunately, they were well controlled throughout the whole time. I also had some bonus hospital visits so my endocrinologists could check up on other symptoms. Because the pituitary naturally enlarges during pregnancy, they like to check up on your visual fields to ensure that between that and the tumour, it’s not putting pressure on your optic nerve.

Planning for Breastfeeding

I really wanted to try breastfeeding, but being on cabergoline meant that could be tricky. Cabergoline inhibits the production of prolactin – the hormone that stimulates the production of breastmilk. My doctors recommended that I stop taking cabergoline six weeks before my due date, to give myself the best chance of breastfeeding, as the drug takes about four weeks to leave your system. Hopefully I would then be able to breastfeed for a couple of months before my symptoms returned and I had to go back on the medication.

So, I duly stopped taking cabergoline at 34 weeks… And then Little Man showed up at 37 weeks, rather earlier than expected! Breastfeeding didn’t work out for us. Although I made colostrum, my milk never came in, and it’s not clear whether it’s because the cabergoline wasn’t out of my system yet, or the stress and separation when Little Man ended up in intensive care for several days.

Planning for the Birth with a Pituitary Tumour

With regards to the birth, my endocrinologists were confident I could have a normal birth. Because the pituitary is involved in producing the hormones that kickstart childbirth, I did ask whether there was any reason to think that I might be less likely to go into labour naturally. But the doctors said that there was no evidence that women with pituitary tumours are more likely to need inductions.

The doctors did specifically write in my notes that I was allowed to have an epidural, as they said sometimes people can mistakenly think it’s not allowed after having transsphenoidal pituitary surgery. They also advised that there should be steroids on hand, to be administered if I experienced any unexplained low blood pressure, in which case an adrenal crisis should be suspected. Fortunately it wasn’t needed.

What advice do I have for other women with a pituitary tumour who are trying for children?

After two transsphenoidal pituitary surgeries, there was always a risk that the function of my pituitary gland had been damaged by the surgery and I might find it difficult to conceive. Fortunately we were very lucky and I was able to get pregnant. Because we knew it might take a while, we planned a long time ahead, and I’d definitely recommend talking to your endocrine team to work out a plan of action well in advance of when you want to start trying to conceive.

Trying me on/ off various treatments took over a year from when we first discussed it, due to delays from the hospital’s administration and us deciding to go back on my regular medication for the three month period of our wedding and honeymoon, to make sure I felt well for it. If we had been actively wanting to start trying for a baby, that would have felt incredibly frustrating and slow. It was frustrating enough even when we knew we didn’t want to start trying until after the wedding!

Do you have any experience of pregnancy and birth with a pituitary tumour which you can share? Let me know in the comments!

my experience of pituitary tumour in pregnancy and birth the sickly mama blog adenoma

One thought on “My Experience of Pituitary Tumour and Pregnancy

  1. Heya, I was diagnosed with a prolactinoma when we were trying to conceive as my periods were so infrequent. I had no idea other than that.
    I was started on cabergoline which shrunk the tumour and enabled me to concieve. I stopped taking cabergoline upon the positive pregnancy test. At 15weeks pregnant I had a pituitary apoplexy which is where the tumour bleeds into itself.
    This was a highly scary time but I had the most amazing team of endocrinologist who supported me closely.
    I had to be signed off sick from work for 2 months and then go back at very reduced duties.
    When the apoplexy happened I was placed back on the cabergoline and continued on it right through the labour and remain on it now – 1 year later.
    Planning the for pregnancy took alot of discussions. We worried about the extra pressure of pushing during labour would cause another apoplexy. So for months we contemplated between a csection or natural labour.
    The risk of csection was that I couldn’t not have the blood thining injections afterwards as this would likely cause the bleed again.
    In the end we agreed with consultants that the safest option was natural labour and remain on cabergoline so planned ahead to bottle feed our baby.
    In the end baby arrived a few days late after a stretch and sweep.
    I gave birth in the high risk part of the labour ward and was strapped up to monitors. Baby arrived perfectly healthy after a natural labour.
    I had an mri 3months after labour to monitor the prolactinoma and all was stable.
    One of the toughest things I faced was the lack of support out there for bottle feeding.
    Now I appriciate that breast is best but actually in our situation then bottle was best. It would have been too risky for me to come off the medication and impossible for me to look after newborn fully whilst feeling unwell.
    Months down the line I would find myself having to justify to members of the public why I was bottle feeding. Crazy eh!

    A year down the line and I have yearly mri scans and visual field checks.
    Since the birth I have been admitted to hospital once for 3 days after having a severe headache but actually it turned out to be nothing.
    I am now trialing steroids as my cortisol level has dropped.
    I have found that being a mum with a pituitary tumour mainly means that when ur shattered and got a constant headache you still find the strength to keep going becuase your just so pleased to have a healthy baby.

    Anyway this is a very brief summary of my life over the past 2years 🙂

    Thanks for the blog – it was an interesting read and really interesting to hear what it felt for somone else facing pregnancy with a pituitary tumour xx

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