I’m a member of lots of Facebook support groups for people with pituitary tumours and other chronic or long-term illnesses. One of the most common types of post is people saying they’re not sure whether or not to go through with whatever treatment has been recommended by their doctor. It’s a big decision, and not something that strangers on the internet can really answer for you! But that doesn’t mean there isn’t any process or technique you can use to make healthcare and treatment decisions… That’s why I’m writing this blog.
I want to share a process I learned doing National Childbirth Trust classes when I was pregnant, which I think is a great technique to follow to help you make these kinds of decisions. It doesn’t have to be restricted to use in healthcare settings, either.
The process is called “BRAIN” and it’s an acronym to help you to remember the questions you should ask about your recommended treatment. You should consider:
Benefits – what are the possible benefits of this treatment?
Risks – what are the risks of doing this?
Alternatives – what alternative options are there? Why are they not the recommended option?
Intuition – what does your gut feeling tell you?
Nothing – what would happen if you don’t do anything?
I think this provides a really great format to have a constructive conversation with your healthcare provider, and to ensure that you’re fully informed about your treatment. It can be helpful to take this list to your appointments so you can work through each question when you see your doctors (if you’re anything like me, you forget what you want to ask if it’s not written down!), to inform your treatment decisions.
I’ve also written previously about my experience of pituitary tumor surgery and making the decision to go ahead with surgery (twice) – you can read about that here.
So alas, I am once again in the position of being a medical mystery… Now, I love a murder mystery, preferably an Agatha Christie. But the only medical mystery show I’ve ever watched was House M.D., in which the patients invariably had to almost die before their doctors worked out that they did not, in fact, have lupus. I’m not so keen on the near-death approach to diagnosis, if I’m honest.
As per usual, the doctors wanted to monitor my thyroid levels. My tumour produces Thyroid Stimulating Hormone (TSH – hence why it’s called a TSHoma), which causes my thyroid gland to over-produce thyroid hormones. So as the medication works, you would expect my TSH levels to reduce, and my thyroid hormone levels to reduce too.
Because my health issues relate to the endocrine system, all the twists and turns of this mystery thriller basically just involve different blood test results. For some reason no major TV networks have shown interest in picking up a pilot based on this concept.
So: my TSH levels have indeed been reducing since re-starting my medication. But my thyroid hormone levels have actually been increasing. Quite a lot. I now have thyroid levels way above the normal range. This makes no sense if the high thyroid levels are caused by the pituitary tumour.
Cue dramatic music. Dr House gives the camera a quizzical look.
Interchangeable Hot Younger Doctor 1: “Could it be lupus?”
The other interchangeable hot young doctors smile and roll their eyes. They don’t know much, but they know that, for some reason, it’s never lupus.
Instead, it looks as though something else is causing the raised thyroid levels. This could potentially be a thyroid condition like Graves Disease, which is an autoimmune illness that causes the body to over produce thyroid hormone, or potentially a growth on my thyroid gland itself. We don’t know. At first, I think the doctors hoped it was just a weird blip on my blood test results, but repeat testing has shown the same pattern.
So my doctors have put me on a higher dose of cabergoline, to make sure that the TSHoma tumour on my pituitary gland is definitely being treated, and ordered some more blood tests to see if it could be Graves Disease. I’m hoping to hear from them this week to find out what we know and what other testing needs to be done. I’m guessing they’ll want to rule out lupus.
A quick search online shows there are only four known cases ever of someone with my condition (TSHoma) also having Graves Disease. One of the trickiest things when you have such a rare condition is that when something out of the ordinary like this happens, you’re just flying blind. No-one really knows what’s going on. Sadly, it seems unlikely that a grizzled, curmudgeonly doctor will reveal he’s known what’s going on the whole time and has just been holding the information back for 50 minutes in order to build dramatic tension.
So please keep your fingers crossed for me, and I’ll update you as soon as we start to unravel this medical mystery…
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 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!
So after much chasing of the hospital, finally they have agreed that I should go back on my medication for my pituitary tumor. The tumor is a very rare kind, which produces thyroid stimulating hormone, and in fact is so rare that there are no medications which are certified for treating it. Therefore, my endocrinologists use medication for other types of pituitary tumor, off-label. It’s called cabergoline, and it has some pretty niche side effects… As you may have guessed from the title of this post. I’m going to write about cabergoline side-effects, but first: why am I on this medication in the first place.
When I wanted to try to get pregnant, the doctors tried taking me off medication completely, but the symptoms of high thyroid levels came back after a couple of months. So they tried me on cabergoline (Dostinex for any Americans reading), a dopamine agonist which is usually used for treating a much more common type of pituitary tumor called a prolactinoma. And – surprisingly – it worked! I was delighted, because the doctors had suggested there was only a one-in-five-ish chance that it would actually work to treat my condition – thyrotropinoma, a.k.a. a pituitary tumour which secretes thyroid stimulating hormone.
The thing about cabergoline though, is that it has some particularly weird possible side effects…
Possible side-effects of cabergoline…
All dopamine receptor agonist drugs come with a risk of impulse control disorders. That means compulsive gambling, compulsive shopping, hypersexuality, binge eating and really any form of addictive or impulsive behaviour. As well as prolactinoma, cabergoline is prescribed for Parkinson’s Disease, often in much higher doses. Here’s an article about a Parkinson’s Disease sufferer who experienced extreme impulse control side effects from taking the drug. It’s from the Daily Mail but well, what can you do. Reputable newspapers don’t usually go for true life scandal about medication that turns you into a transvestite con artist.
Taking A Gamble
Some patients won lawsuits against the companies who manufactured these drugs, for failing to provide a warning about these side effects, because of the effect the medication had upon them and the impact on their lives. There have been other cases where people have escaped prison sentences after committing crimes, by successfully evidencing that their behaviour was caused by the medication – although that argument doesn’t work for everybody.
These side effects aren’t especially common in pituitary patients, but my endocrinologists warned me about them before I first started on the drug. Every time I go to the hospital with my husband, they check in with him that I haven’t started gambling or compulsively shopping. Obviously they check in with me too, but they like to get his more unbiased view!
Other Side-Effects (It’s Not Just Gambling Addiction)
More common side effects of cabergoline include possible cardiac effects, low blood pressure and dizziness, nausea and vomiting, and hallucinations. Other less common side effects include psychosis and delusions. It’s really a list of side effects that makes you think twice about taking the medication. I’m a member of several Facebook groups for pituitary patients, and there are often anxious posts from patients who have been prescribed cabergoline who are concerned about the possible side effects.
Ergot-ta Be Kidding Me
So why all the crazy side effects? Well, cabergoline is actually derived from ergot. Ergot is a kind of fungus which can grow on grains and, if ingested in large amounts, will make you crazy – hallucinations, delirium, psychosis and mania, among other things. It’s even been suggested that ergotism might have been the root cause of the Salem witch trials, with ergot poisoning causing symptoms of “bewitchment”. So perhaps it’s not surprising that cabergoline can have some pretty crazy side effects too.
My Experience Of Cabergoline Side-Effects
Last time I started the medication, I got on with it pretty well. I did experience some dizziness and low blood pressure – I tend to have somewhat low blood pressure anyway – but the longer that I took the drug, the more my body adapted to it, and the blood pressure issues resolved. So I’m hoping that I won’t have any major problems this time… Fingers crossed! But if you see me in Ladbrokes, maybe let my husband know.