So, I have a super rare tumor on my pituitary gland. It’s called a TSHoma or thyrotropinoma, because it produces thyroid-stimulating hormone (TSH). I’ve had surgery on it twice but we’ve never quite been able to get rid of it, there’s still a teeny stumpy bit left.
There’s actually technically no approved medical treatment for my condition, because it’s so rare, but for many years I was treated off-label with a medication called Somatuline, which is used for another kind of pituitary tumor and worked well for mine. However, when my husband and I decided we wanted to try for a baby, my endocrinologists suggested trying another medication, also off-label, usually used for yet another kind of pituitary tumor. It’s called cabergoline and they suggested trying it because it’s been used slightly more often in pregnancy compared to the other medication I was on. My doctors thought there was maybe a one in five or one in six chance that it would work to treat my tumor, so I was pretty pleased when it did.
Cabergoline stops you lactating, because it inhibits the production of prolactin by the pituitary. As I wanted to have a chance at breastfeeding, we agreed that I would stop taking the medication six weeks before my due date with Little Man, to give it a good chance to leave my system and allow me to produce breast milk before he arrived.
As it turned out, Little Man had his own plans. My waters went at 36 weeks and 5 days, and he arrived at 37 weeks exactly (just 2 and a half hours away from being technically premature!). Breastfeeding didn’t work out for us, but when I saw my endocrinologist a few weeks after the birth, I wasn’t having any symptoms from being off the medication, so we agreed I would stay off it for now. I was due to return in three months, and get in touch if my symptoms came back.
Well, now that coronavirus is here and I really don’t want to go to the hospital or GPs, my symptoms are back and I want to go back on my medication. It’s not terrible so far, just occasionally a fast heart rate, feeling a bit jittery, and the odd shooting pain in my neck (always the most unambiguous sign that my thyroid is doing something weird).
The hospital has introduced a great new telephone system where you can’t just phone a department directly, you have to go through a central switchboard. This is great because it means that you can wait on hold for ages to explain why you’re calling to the switchboard operator, who then explains that they can’t help you and will need to put you through to the department. Then you’re on hold again, which is brilliant because the hold music is not at all deeply irritating. Then either a) no one answers and the call just terminates, or b) someone answers and you get to explain why you’re calling again, so they can tell you that they’re not the right person to talk to and they’ll put you through to the relevant person. Then the relevant person isn’t in, so you’re told they’ll call you back. Then, when they don’t call you back, you get to start the whole process again.
It really is a genius of modern system design, because previously when I had to call the hospital, I sometimes only reached medium levels of furious hatred at their appalling administration, whereas now I reach maximum capacity every time.
So, last week I sent an email to my endocrinologist’s secretary, in a bid to avoid having to telephone hundreds of times until my soul is macerated completely and starts to run out of my nose. However, I have not heard back and my symptoms are only getting more noticeable, so I guess telephoning is now my only option. I can’t wait!
