Last Christmas I realized I was feeling ropey and had been feeling extra rubbish for quite some time. I was dizzy, constantly. I could be sitting watching TV and all of a sudden the room would lurch to the left and back again, and there were days when every time I moved my head the world tilted on its axis. I could sleep for 8 hours straight which is unheard of for me and two hours later need to go back to sleep (I’ve never slept during the day no matter how ill I’ve ever been not least because ME has given me horrific insomnia). My brain was so fuzzy I literally couldn’t form cohesive thoughts and I had exhaustion so profound some days I couldn’t get off the couch.
Of course, all of these are symptoms of my pre-existing conditions but this felt totally different to my normal rubbish-ness and I knew I wasn’t having an M.E. relapse or a mast cell or EDS flare. No, something else was going on and I instinctively knew it was related to my iron levels particularly as when I had my period I was absolutely poleaxed.
As outlined in my first post on Anaemia back in February I have several risk factors for iron deficiency and, coupled with my peri-menopause and worsening endometriosis, I knew I needed to get my ferritin levels checked. They unsurprisingly came back at 17 which according to the lab results was right on the bottom rung of ‘normal’ (17-291), though realistically in order to feel well you should have a ferritin level of at least 50 and preferably above 90. My vitamin D was also considered sub-clinically low, ie outside the normal range. My GP dismissed anaemia though because my red blood count was fine and basically just fobbed me off, however she wasn’t the one feeling so crap she couldn’t function so I started on some over-the-counter supplements.
My mast cells seem to hate tablets of all descriptions, so my options are limited to liquids and syrups which are few and far between. In addition, many of the liquid iron preparations such as Floradix contained all sorts of ingredients I didn’t want or need such as apples (to which I’m mildly truly allergic), spinach, nettles and CoQ10. So I opted for the ‘Get More Vitamin D mango & passionfruit‘ drink and ‘Spatone‘ natural iron water both of which I could have delivered with my groceries from Tesco.
I have about 200ml of the Vitamin D drink each day, which tastes OK but not brilliant, and gives me 80% of the recommended daily allowance of Vitamin D. According to my GP, the lab won’t re-test Vitamin D for 12 months so I’ve no idea whether or not my levels have improved after nearly 10 months of supplementation.
Spatone is a sachet of naturally iron rich water which I take mixed in pear juice (the vitamin C aids absorption of the iron and disguises the awful metallic taste). Iron supplements are, however, notorious for causing nausea, reflux, constipation or diarrhoea and I must admit after 4 days on Spatone I felt sick 24/7 and had awful colic-like stomach pain. So I had a break for a week, then re-started the sachets but just taking a teaspoon per day and gradually working up to a full sachet. This worked fine and I had no side-effects whatsoever 🙂
Within a week of starting Spatone my dizziness almost disappeared and I did feel a bit less tired which was great, but unfortunately for me the effects haven’t lasted. By September I was starting to feel battered by exhaustion again, wanted to sleep for England, was as white as a sheet and feeling constantly dizzy. In addition I seem to have developed tinnitus, which is a constant low level high pitched ringing hiss in my ears, and I’ve noticed a change in my toe nails (but not my finger nails!). One of my toe nails has split and despite the nail continuing to grow it just keeps splitting in the same place, while the other nails have started to flatten at the ends. Spoon shaped nails are a sign of anaemia, but when you Google images you only see horrendous photos at the severe end of the spectrum which bear no resemblance to my mildly flattened nails. So here’s a couple of pictures of what’s happening for me:
I doubled my dose of Spatone but it didn’t help. In fact, my symptoms continued to get worse so I rang my GP again, who tried to fob me off by saying that as I already have ME the peri-menopause is going to knock me about, but I tried calmly to explain that I know what ME feels like and this is completely different. I insisted I wanted my bloods done again, in particular my ferritin and thyroid, although I’m sure my thyroid is fine as I’m not cold and have had no weight loss or gain issues other than that expected of going through The Change. The first appointment for a blood draw I could get isn’t until 7th December (!), then of course it has to be sent to the lab, analysed and the results sent back to my GP by which time it will be sodding Christmas and everything will grind to a halt until January when it will be so busy getting another appointment with my GP to discuss the results will be impossible. So I’m now trying to find a different liquid iron supplement to take but am so far struggling. The thought of feeling this awful for at least the next several weeks, and in particular over Christmas, is pretty depressing.
When you have a chronic disease doctors do tend to put every single symptom you have down to that and it’s often a fight to get them to investigate new symptoms. But investigate them you must, because it’s been my experience that all the new symptoms I’ve developed over the years have been down to hitherto unknown diseases and were nothing to do with my pre-existing M.E. In particular, trying to get my chronic pain recognized was a mare because all the doctors I saw simply put it down to part of parcel of M.E. or tried to diagnose me with Fibromyalgia when I knew it was something else, which of course turned out to be Ehlers-Danlos Syndrome. Then my stomach issues were put down to my EDS, when they turned out to be Mast Cell Disease. And now my rubbish-ness is being put down to the peri-menopause or my M.E. when it’s going to turn out to be anaemia or at the least iron deficiency.
It’s so hard to fight the medical profession for treatment when you are this exhausted and there are days I feel like putting up and shutting up, but unfortunately that’s not an option when I am so floored I can barely get through the day. So I shall keep on plugging away until I find out what’s actually going on and come up with a solution.