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.