Posted on June 15, 2019
Several months ago, I had some blood tests done and they revealed that I was incredibly low in iron. Since I’ve had some pretty unpleasant experiences with supplements, my doctor recommended an infusion and set it up straight away at the local hospital. I was really impressed by the efficiency of it all: the speed at which the problem was identified and the treatment arranged. That was the last we saw of that.
The actual hospital visit for the infusion took six hours. All was going smoothly: they’d taken my blood just to double check the iron levels but then we saw no sign of the doctor for over an hour. When someone eventually appeared, they told us that somehow they’d managed to test for everything but iron and were having to run the tests again. It took so long that I fell asleep in the chair.
Hours later, they finally had the infusion in. It was cold and made me feel kind of sick. It was a bit like when you get a general anaesthetic, if you’ve ever had one of those. But it was okay. It only lasted about fifteen minutes and then I had to stay for half an hour to make sure there weren’t any negative interactions. But then it was all over and I could go home. I thought I’d keep notes on how I reacted in case it would be useful to anyone else.
I slept very late everyday (sometimes into the afternoon when I’m usually up around eight) and still struggled to get up. Despite all the sleep, I could still nap in the day and would start dozing off around ten. I had absolutely no energy. I tried to continue my routine of getting up early to swim but I could barely drag myself downstairs (or even out of bed); I couldn’t stand up long enough to shower and had to wash my hair in the bath, which I absolutely hate doing. I was very shaky and felt just generally unwell.
At the beginning of the week, I also reduced two of my medications, Clomipramine and Flupentixol, as I’d previously planned with my Psychiatrist. The infusion came about so quickly that the plans collided with no time to adjust. I also went down with a migraine during the week so it’s hard to tell what caused what and how each thing affects the others.
Slowly, I started to wake up at my normal time again but I was still very tired and sleepy. Doing anything was a struggle but by the end of the week, I started to feel a bit better and a bit more like myself pre-infusion. I also started to feel like myself pre-Flupentixol: I had my first shower standing up in weeks and I walked around London without feeling like I was going to faint. It felt a bit like a fog was lifting.
The week began with my first shower standing up and I was positively giddy about it. I had to lie down afterwards but it was amazing to be able to do something again that had been taken away. I was still physically exhausted but I no longer felt like I was going to faint if I stood up for too long.
Mentally and emotionally, I felt like I was declining. I felt depressed and restless; I didn’t know what to do with myself.
I did spend the second half of the week sick, feeling nauseous with a cold and sore throat. I don’t know whether that’s related to the infusion or the changing medications or whether it was a coincidence. Either way, I spent several days in bed feeling miserable.
At the beginning of the fourth week, I reduced the Clomipramine again. I wish all of these things could’ve happened separately from each other so the effects could be clearly identified by unfortunately, that just wasn’t in the cards this time. The reduction of the Clomipramine, an antidepressant, no doubt had a real impact on my mood. I felt overwhelmed by feelings of depression and hopelessness and I just didn’t know what to do with myself. I couldn’t settle or concentrate so it was hard to distract myself from these feelings. My anxiety also increased, which was an added struggle.
Energy wise, I felt back to my ‘normal’ levels of tiredness: I couldn’t – can’t – stand or walk for very long, big events and big emotions require several days of recovery, I need a lot of sleep. But I’m a lot better. I’m swimming again and going up to London has been easier. So on that front, there has been improvement.
Everything has been fairly consistent since then and eight weeks after the infusion, I went back for a blood test to see if the infusion worked. The results were certainly interesting: by my maths, my iron levels have gone up 4000%. So, for the moment at least, it seems to have worked. In the medical sense anyway – I’m not seeing as much of an improvement as I would’ve hoped, energy wise. I’d hoped that this might explain the ongoing trouble I have with fatigue but if this is up to normal levels and I’m still struggling as much as I am, then it’s not the answer, or not the whole answer.
It’s not the end of the road. In three months, I’ll be going back for another blood test, this time to find out whether my body is holding onto and processing the iron properly. So that may yield more answers, more information. From there, I’m not sure what happens but it’s not the only route we’re pursuing. There’s got to be an answer and I’m not giving up yet.
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.