Prolactinoma and Pregnancy: Part Two

I have always wanted children. When friends were planning on going travelling I was simply focused on when I could start having babies. Plural. More than one was the plan. In my last post Prolactinoma and Pregnancy Part One I spoke about my initial diagnosis of the prolactinoma, the process of getting pregnant, the birth, breastfeeding and weaning. Throughout my pregnancy and whilst breastfeeding I was taken off all medication as it is not deemed safe to stay on it in most cases. However after 18 months of breastfeeding Lily was weaned off the breast and I could return to medication again.

Returning To Medication

Now when it has come to me returning to medication I have had a bumpy road. My initial appointment was back with my regular consultant, he suggested an MRI to check the growth of the prolactinoma and bloods to check my prolactin levels. Now what I have been told is that sometimes pregnancy can actually cause prolactinomas to shrink or in some cases completely disappear so I was hopeful, but realistically I assumed mine hadn’t- my oversupply of milk along with not drying up very quickly after stopping breastfeeding were pretty clear indications it was still there.

A month or so later my consultant confirmed this was unfortunately the case, the prolactinoma was still present and my prolactin levels were incredibly high. Prolactin levels increase whilst breastfeeding anyway, however for mine to still be as high as it was after stopping feeding would be unusual if it weren’t for the prolactinoma. The clear path was to put me back on Cabergoline, the medicine I was on prior to conceiving Lily. However, the good news was he could see from the MRI that the prolactinoma had considerably reduced in size and was now extremely small. I was hopeful that either the medication would then do the rest of the job and get rid of it, or following a second pregnancy it would completely go. Sadly this is not what has happened.

Prolactinoma & Fertility

Now it’s important here to make it clear to anyone who has a prolactinoma that once medication has commenced either before having a first baby or after having a child prolactin levels will almost always reduce and fertility will go back to normal. As I speak about in Part One prior to falling pregnant with Lily Cabergoline quickly returned my periods to a regular state, and my fertility was just fine. In fact I fell very quickly pregnant with Lily after just one month. My pregnancy was straight forward and all was fine. What has happened to me since having Lily is unusul.

Cabergoline

I went back on the Cabergoline as instructed and assumed things would return to how they were prior to me falling pregnant. I started on a low dose of Cabergoline with the plan that this would increase as needed. My dose before pregnancy was quite high as Cabergoline is one of those drugs that after a while your body can get used to and doesn’t respond as effectively. But you do need to start low so as to reduce any side effects that may occur.

Slow Progress

With Lily only 18 months old and myself only in my mid 20s I felt no massive urgency to get my levels down to a normal level with regards to trying for another baby. So I went to my appointments where they told me my levels were being a bit stubborn and not really reducing as fast as they would like. I would see different doctors who I would have to explain things to each time, there was no real consistency with how each of them wanted to treat me. A lot of the time they were also very cautious about increasing my dose so things weren’t moving fast. At one appointment the registrar had to go and ask a colleague for advice three times only to end up saying she didn’t know what to do with me and would ask my main consultant to call me. This was extremely frustrating for us as although I was in no rush to fall pregnant again I didn’t feel like my body was back to normal and I wanted it to be. I still had not had a period and my milk had not completely dried up.

Plans For A Second Pregnancy

As the months and years passed and Lily was around 3 years old Joe and I both said that soon we would like to start trying for baby number 2. After the ease in which we fell pregnant the first time we gave no thought to any worries that it might not happen this time despite my periods not being established, I assumed somehow it would still happen. We spoke to the endocrinologist who we always used to see regularly about wanting to start trying for another baby and my treatment was stepped up a gear in the hope to get my levels to a low enough point to establish a regular cycle. I also explained that from now on we would only like to see him, this has massively improved my experience in the treatment of my prolactinoma and I would recommend to anyone going through this to ensure you see the same person each time for them to get fully on-board with whatever you are planning.

Resistant Prolactinoma

The conversation regarding wanting to try for a second baby occurred in May 2017, as I’m sure you’re working out by now this was not as straight forward as we hoped as it is now July 2019 and we still have the one child. You see for some reason despite various different medications, herbal remedies and acupuncture I have not fallen pregnant. We have now been actively trying since August 2017, nearly 2 years. The problem is my body seems to have become resistant to any medication that is aimed at reducing prolactin levels. These are all dopamine based and so it seems I have become pretty dopamine resistant. My prolactin levels fell for a time, but now remain high, this has a knock on effect to fertility as high levels of prolactin make your body think you are either already pregnant or breastfeeding and can (in my case) prevent ovulation.

Fertility Clinic

I was referred to the fertility clinic a year and a half ago to see if they could help in any way. The consultant made it clear he thought the only cause was the prolactin levels but regardless of this Joe and I had various tests done just to check there was nothing else going on alongside this which was causing the infertility. All was absolutely fine, we seem to be in fact in very good working order with all our bits and pieces, but without ovulation pregnancy just wasn’t occurring.

Hope At Last

Then earlier in the year we had a breakthrough. My fertility consultant decided to put me on a medication called Provera, this is used to induce a bleed and was to be followed by a different drug called Clomid to try to induce ovulation. It was an intense process and after years of no hope I finally felt like this could work. I tried not to get my hopes up but when I started on the Provera and I had a bleed my hopes got slightly built up, then I started the Clomid and the two scans I had showed that I was in fact ovulating, and not only that but I had produced 2 follicles which had both ovulated. It all seemed to be going so well. My mind did run away with itself.

A Failed Attempt

Unfortunately a week and a half after my ovulation I started to bleed, the first round had not worked. However after some thought I did look at this as still a fantastic thing- I had had a period, I had ovulated, I had produced 2 follicles, this was all extremely successful in every way other than it not achieving a pregnancy. My fertility consultant was thrilled and prescribed me another three rounds of the drugs and I felt really excited.

Hyperthyroidism

A month later just one week before I was due to start the next round of Provera this excitement came crashing down. At a routine endocrinology (Prolactinoma) appointment with my consultant he asked me how I had been feeling, I had previously told him I had experienced some unexpected weight loss and although I assumed it was probably due to starting the gym and eating better I thought it should be looked at. Well it turns out in fact I had developed an overactive thyroid- hyperthyroidism. OK I thought that’s fine we can deal with that, until he said he would now like me to stop trying for a baby ideally for a whole year.

I kept it together whilst we were in the room and tried to just gather as much information as possible, but then broke down as soon as I got outside, I was completely heartbroken, I couldn’t believe my bad luck. I was given three treatment options: Get pregnant but accept that there are risks for both me and the baby; take a radioactive iodine tablet but stay away from Lily for 2 weeks following treatment and still wait 6 months to try for another baby; or take the standard thyroid medication and wait for a year to try for another baby. We’re still going through options at the moment but it’s looking like it’s the third one for us, so we have started that now.

Here We Are Now

And so we have our massive problem, or problems now, the thing that is somewhat on my mind nearly all of the time, never a day goes by when I don’t at some point feel sad, frustrated and upset about it. I’m coping much better now than I was, I don’t know if it’s the thyroid medication levelling out my emotions or whether I’m just getting used to it all, but I am OK. I feel like I know about the prolactinoma I’m used to it and I have researched it for years, but the thyroid is all a bit new still. I’m still hoping that in a years time we can start trying again and hopefully with the knowledge that the fertility medication worked previously in doing what it was supposed to do hopefully it will work again and maybe it will happen next time.

Until then we just have to wait and see. It has been a month already since I started my thyroid medication so that’s 11 months of waiting to try again now not 12, and I guess I have to look at it like that.

To Finish up…

I want to finish by saying that I know we are incredibly lucky to have Lily. Some people sadly can’t have even the one child and I am forever grateful that we have our beautiful girl. But the plan was to have more than one, I have an intense want to have another child and I can’t help but feel it. I want another baby to love with all my heart, to join our happy family, a brother or sister for Lily. Some of the medication has had horrible side effects and that has also been tough, I have had 2 years of being poked and prodded in every direction. I spent my recent birthday throwing up and feeling exhausted after a dose of one particular medication was increased, only to be told the following week it wasn’t even working at all.

But I’m still hoping with all my might that in a year or so things might be better, and one day hopefully we will be able to add to our family.

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3 Comments

  1. What you’re going though is an ordeal, but you seem like a strong person who is nevertheless feeling positive, which I think is the only way to deal with this situation. Good luck.

  2. Hello Beth,
    Thank you for sharing your experience. I must say that you have a wonderful family and an adorable daughter. I pray that your heart desire of another child is granted soon so our beautiful Lily will have a playmate.

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