My worry began on Sunday evening, when I realised I’d been taking one steroid a day for this cycle, when I should have been taking five. 5mg a day instead of 25mg. My fault, as I just assumed “a low-dose steroid” meant one tablet and never troubled to look at the pill bottle, where it said five. Checking back, my meds plan mentioned 25mg alright but, whereas it specified the number of tablets in brackets as well as the mg for the Estrofem, it didn’t for the steroid, and no one ever mentioned taking five tablets. I should have made the leap.
I did smell a rat the Tuesday the clinic rang with my positive beta result. I remember being a little confused when the nurse said that, when I stopped all the meds at 12 weeks, I should wean myself gradually off the steroid. I thought he said something about “from five to four and so on” but I was so dazed I didn’t join the dots. And when the confirmation of my positive test arrived in the post two days later and listed Prednisolone 25mgs daily, I still didn’t twig. It was only when I was tidying up my meds on Sunday night that a slight unease made me check the label and my heart skipped a beat.
The low dose didn’t stop me from getting pregnant, which was comforting, but the niggling worry that my immune system had already gone into overdrive and started attacking the pregnancy started on Sunday night and was deeply, deeply rooted by Monday morning. I left a message at the clinic asking what I should do about the dosage and missed a call from them saying I should start on the five tablets the next morning, which seemed a long way away.
Clinic instructions are to test weekly until the first scan. I wasn’t going to bother, as testing for three weeks seemed like unnecessary torture to me, but my anxiety made me cave and drive down to the pharmacy on Monday afternoon to buy one of the Clearblue tests that tell you how far gone you are. Big mistake. After getting the “Pregnant” and then waiting what seemed like an age for the “by how much” bit, I got “2-3 weeks” since conception, which translates as “Your doctor will date your pregnancy at 4-5 weeks”. Technically only 2 days out, assuming I was at the top end of the two to three weeks, but not quite the result I wanted at 18p5dt, that is 5 weeks 2 days. I had been hoping for 3+ weeks, which although still kind of inconclusive corresponds to 5+ weeks.
You don’t want to google this if it happens to you – I found someone who had had the 2-3 weeks result at 18p5dt with a Clearblue test and I just had to stop reading.
I rang the clinic the next morning, a week to the day after my first positive beta, and arranged another blood test for around noon, hoping to ease my mind and move on. I bumped into the lovely Dr L in the corridor afterwards and she had heard the good news, which was heart-warming. When I said I was freaking out slightly because I’d mucked up my steroid dosage, she scoffed, making me feel a lot better.
The clinic rang at 3.40pm and the news was not great. Whereas we were at 280.35 last Tuesday, a week later we were at only 423. The level is supposed to double every two to three days, though this isn’t an exact science. However, the nurse explained that 280 was pretty high for the first test, and at four to five weeks the level could be anywhere from 75 to 2,060 (I was five weeks three days).
To prolong the agony, I booked in a third blood test for today, Thursday, morning before my third intralipids. As usual, I had to wait until the afternoon to get the results back. Bad news – down to 225, “a non-viable pregnancy”.
So it’s over. I was really kicking myself and directing a lot of anger internally at the start of the week but by today I was so exhausted with waiting to find out I was glad to finally know. I’ve generally been philosophical and haven’t cried after any of these failed cycles and I haven’t yet with this one. I know it will eat at me slightly that I could have prevented this and that it was the natural killer cells that killed off the pregnancy but we’ll never know. Half of these IVFs will fail anyway. However, I will have a general feedback point to make to the clinic about being consistent in specifying when there’s more than one tablet to be taken – if only to spare other women the agonies of thinking they’ve mucked things up themselves.
So there we are. I’m not back to square one: they’ve identified my immune issues and I still have two frozen embryos waiting, plus hopefully other eggs-a-dormant if I need to kick the follicles back into action after that (I really hope I don’t have to do that). At this stage, I think I’d like to transfer only one embryo next time in case they haven’t sorted out all the immune/any other problems fully. I hate the thought of having wasted those four hard-won embryos.
I found out today that Dr O, my consultant, the guy I’ve only ever seen once at the initial consultation in July 2012 and have since spoken to only by phone, is now no longer consulting with patients, just doing theatre and other work. This is a blessing in a way, as I’ve generally had to wait for six weeks or so for a phone consult after a failed cycle. Instead, I will be taking final bloods and talking to the lovely Dr L on Monday and I can move on quickly after that.
And I’ll keep my mother’s letter for next time :-)