Test Results

My theory that “no news means good news” when it comes to test results proved to be slightly flawed in that it doesn’t take into account when it’s actually “no news means your doctor just hasn’t had time to check the results yet.” At any rate, my GP rang me on Wednesday to tell the blood tests I had done a while ago had shown my B12 is quite low. I think you’re supposed to feel upset when you’re told there’s something new wrong with you, but honestly I just felt happy that it wasn’t anything more serious and that for once it's something easily solvable.

It always cracks me up that on the occasions I’ve gotten a phone call about tests results, I’ve always been doing something inappropriate considering what they’re telling me. When they rang to tell me I had coeliac disease, I was eating a box of whole-wheat crackers. When it was about my kidney function going south, my mum and I were making vodka cocktails (it was Christmas Eve, don’t judge!) And this time I’d just put some chicken back in the fridge in favour of making something vegan for dinner.

I know probably I don’t eat enough meat considering I already have iron-deficient anaemia, but the B12 is more likely low because of my stomach’s fun habit of deciding it doesn’t want to absorb food anymore. After a long time of my weight staying stable, some of the gut issues have reappeared and that has resulted in a couple of kilos disappearing again. I’ve been able to keep my iron levels normal with tablets, but given the weight loss at the moment, my GP decided to go straight to a B12 injection to give the best chance of it being absorbed.

I wrote this when I was five. I assume I’d just had my vaccinations (not entirely sure what the nutty friend part is about) but it did make me laugh how almost prophetic this statement is. As a five year old doing my best to avoid having any shots done, I don’t think I ever would have imagined someday I’d be injecting myself with medication every week, having regular blood tests, and occasional extra IM shots like this one, but there you go. I’m pretty blasé about needles these days, so agreed to let a student nurse do her first injection on me. She actually did an amazing job, and I barely even felt it. Fun times!  

A quick google search told me that a lot of issues I’ve been having lately, including the irregular heart rate, could be down to the B12, though there seem to be varying accounts of how long it takes for symptoms to appear. Most say there are various symptoms (the ones I’ve been experiencing) that can appear in the first few years, then a whole lot of much more serious ones that appear the longer you are deficient, so thankfully this should stop it progressing to that. I’ve also heard completely opposing stories from people as to whether they felt amazing straight away after the injection, whether it took them a couple of weeks to notice a difference, or whether they felt nothing at all.

So far I haven’t noticed any major change, but it’s only been a couple of days so I’m keeping my fingers crossed I’m in the better-after-a-little-while camp.

Thanks for reading,

Little Miss Autoimmune

Tests, Tests, and more Tests

I don’t like going to the doctor, when new symptoms appear. Don’t get me wrong, my GP, nurse and Rheumatologist are all lovely, and I am so thankful to live somewhere where I do have the option to go to the doctor when I need to; I just dislike the process that follows once something new happens. Because these diseases can present in such a range of ways, basically anything that happens could be down to one of them. It also could be down to a range of other diseases or infections, some of which could be serious if left untreated. So we go through the process of running tests, and usually one of two things happens:

1. The tests all come back normal, and the symptoms get put down to one of the diseases I’ve already been diagnosed with, or 
2. The tests don’t come back normal, the results are abnormal but in some non-specific way that doesn’t point to anything clear-cut… and the symptoms and test results get put down to one of the diseases I’ve already been diagnosed with.

 

It’s often tempting to not go in to see the doctor in the first place. In fact, I do tend to sit on symptoms for quite a while, before finally dragging myself off to an appointment when it becomes painfully obvious they aren’t going away. The problem is, the times I have decided things are just down to one of my autoimmune diseases, and not gone in at all, those have been the times it actually was an infection or something new that really did need to be dealt with.

 

The week before last, I had the MRI I wrote about a few months ago. As I was filling out the forms, ready to go to the appointment, my dad reminded me that a number of years ago when I had to have an MRI I developed sudden claustrophobia, panicked and had to be pulled out. Fortunately this time I didn’t panic, and the whole process was a lot less traumatic than I thought it was going to be. Really the only problem was that after lying completely still for so long, my joints all locked up so that once I was allowed to move again, I couldn’t. My blood pressure did also crash when I stood up, but judging by how quickly the radiographers picked up the signs that I was about to flake out, I’m not the first patient that has happened to!

 

I haven’t had the results back from it yet, but I’m taking that as a good sign, as I’m sure they would have been in touch pretty quickly if there was something wrong. 

 

The other thing that’s been happening lately is that I’ve been having some irregular heart rhythms, one episode in particular of which was quite unpleasant. This afternoon I'm having an ECG, to check on that, and last week I had some extra blood tests done along with my monthly labs. The process was complicated somewhat by the fact that my severe latex allergy meant the blood test nurse couldn't wear gloves, but her severe alcohol swap allergy meant she couldn't take blood my blood without them. The ridiculousness of that situation caused some confusion, but in the end she did manage to find a single nitrate glove, and completed the test. After fifteen years of regular blood tests, the vein in my arm is a tad scared and the blood tests, which used to be painless, have started to hurt quite a bit. The regular tests are to check inflammation levels, liver function, blood counts, and electrolytes. While these have all been out, on and off, for the past few years, my GP said they’ve all be normal since the beginning of March, so I may be able drop back to having them 3 monthly instead if my rheumy agrees, which would be fantastic for my poor wee vein.   

 

That should be the last of the tests for a while, then it’s just Hungry, Hungry Hippos until the results come back. Perhaps it’s just because I’ve been reading Eric Hill’s lift-the-flap Spot books to my nephew lately, but the whole thing has started to feel a little bit like a game of hide-and-seek.

 

        Is something wrong in your brain? No, keep looking Spot! 

        Is something wrong in your blood? No, keep looking Spot!

        Is something wrong in your heart…?

 

If nothing else, maybe it’ll inspire my next picture book.

 

Thanks for reading,

Little Miss Autoimmune

UPDATE: After posting this this morning, it turned out the doctor was able to review my ECG and give me the results pretty quickly after the appointment, so no Hungry, Hungry Hippos/waiting game on that one. It was normal, so no obvious problems there. Yay! 

 

Hungry, Hungry Hippos

I think most of my generation in New Zealand grew up watching repeats of Friends and The Simpsons every weeknight. In most situations you can make a reference to either show, and everyone in the room will have seen the episode so many times themselves they instantly get what you mean. Personally every time I hear an oven timer go off, I feel the urge to yell: “My Fajitas!” and when my hair gets particularly curly: “It’s the humidity!” And I know every time one of my friends mentions Hungry, Hungry Hippos that what they’re really playing is the waiting game.

It’s possible another diagnosis may be on the horizon for me. Nothing confirmed yet; it could turn out to be absolutely nothing. I wasn’t going to post about this, until I knew for sure either way but then I realised “the waiting game” is a big part of living with chronic illness. Whether it’s test results, approval for new medications, treatments to start working, or answers to the cause of new symptoms, it feels like we’re always waiting for something.

I went to see my GP to get some forms filled in last Monday, and in the course of the appointment, I asked her to check my blood pressure. I was pretty sure it was low. I’ve been having more and more dizzy spells and headaches lately, especially upon standing up from sitting or lying, and I’ve had a couple of unexplained falls as well. It was, as I suspected, low but we were a little surprised by how low. At the time it was taken, I was feeling fine which suggests it may be dipping even further when I’m having dizzy spells. My GP suggested I should start drinking coffee to raise it, and when I mentioned I’d found drinking water with added electrolytes helped, she checked my blood test results and found my electrolytes levels are also low. I think there are probably a lot of reasons this can happen, but the one that my doctor thinks it could be is Addison’s disease. I don’t know too much about it, and I’m resisting to urge to google anymore because the Wikipedia page freaked me out. From what I have read, I do have all the symptoms, but given that they are all fairly non-specific symptoms and could be attributed to any one of the other conditions I already have, that doesn’t really mean much.

Autoimmune disorders tend to run in packs, so after you’ve been diagnosed with a few it’s not really all that much of a surprise when another one is added. Even so, I have to admit the possibility of this one has unsettled me a little, especially as I hadn’t even considered anything new might be wrong, before my doctor brought it up. My GP said it’s quite hard to diagnose, and she’s on leave for the next month, so for now it’s just extra blood tests, self-monitoring of my blood pressure... and playing the waiting game.

Whenever you’re waiting on something the advice everyone gives is don’t think about it, but as we all know that’s like trying not to think about elephant when someone tells you not to think about elephants. Still, I’m doing my best not to worry about it at least.   

The waiting game sucks. I really need to get Hungry, Hungry Hippos.

Thanks for reading 
Little Miss Autoimmune