Having felt rubbish since the start of the year, with persistent and often disabling day-long dizziness, overwhelming fatigue, sleeping like the dead, flattened toe nails and tinnitus, last week I had a blood test to check things like my iron levels, red blood cell health, B12, folate, thyroid and various other bits ‘n bobs. My symptoms were all indicative of anaemia and being as though I have 5 risk factors for the disease and my periods are now heavier than usual due to the peri-menopause it was a no brainer to me that I’d be anaemic. Er, think again.
I last had my ferritin (iron) level checked back in April and it was 18ug/L. The normal range is 17-291ug/L so I was right on the bottom rung of the iron ladder, however because I was still within the “normal” range my GP was unconcerned. She wasn’t the one feeling like a washed out rag doll, however, so I took a closer look at my vegetarian restricted diet, making sure I incorporated more iron rich foods like beans, nuts, quinoa and lentils with both my lunch and dinner every single day and started myself on some supplements. Iron tablets are renowned for playing havoc with your stomach and making you hugely constipated and as I already have intestinal pain, nausea and difficulty pooping I opted for Spatone which is simply spring water naturally enriched with easily absorbed iron. I’ve had zero side effects from Spatone, despite recently taking 2 sachets per day (which is suggested for pregnant women with anaemia) rather than the recommended 1. Fast forward 8 months and my ferritin level has gone from 18ug/L to 46ug/L which still isn’t brilliant (it should really be over 90ug/L) but is a huge improvement. Couple that with the fact my B12, folate and red blood cells are bang in the middle of the normal range and my symptoms definitely aren’t down to anaemia, which is good on the one hand but still leaves me with crippling unexplained symptoms.
In the UK we usually ring up the receptionist for our blood results and she just tells us that “everything’s fine” if they all come back within the normal range, however I urge people to actually go along to the health centre and request a print-out of the results. Mine have been revelatory. If I hadn’t asked to actually see them back in the Spring I would never have known that although my ferritin was “normal” it was only normal by 1ug/L. I would also have never seen my kidney (GFR) results, which were accompanied by a warning exclamation mark so were anything but “normal”. My first kidney test was done back in February and came back at 73mL/min/1.73m2. The normal range for my age is 90-120 so my kidney function was way off. I queried this with my GP who again was totally unconcerned and said it’s only a snap shot and maybe I was just dehydrated. I know that I am never dehydrated because I drink pints of water throughout the day but I had to just leave it at that. When I had further bloods done in April I asked for my GFR to be repeated and this time it was 82, which was an improvement but still nowhere near normal. This time my GFR test is back at 78, which is indicative of Stage 2 chronic kidney disease. How this can be considered “normal” and not concern my doctor staggers me especially when mast cell disease can affect the kidneys and coupled with something else I discovered buried in my blood results.
Magnesium levels are kept within very small parameters by our kidneys and the normal range is 0.70-1.00mmol/L, but my result came back at 1.10mmol/L which is considered to be mild Hypermagnesemia, an electrolyte imbalance, and my result was accompanied by a warning exclamation mark. There is loads of information online about magnesium deficiency and very little about high magnesium, which is usually only found in people taking drugs high in magnesium (which I’m not) or in the end stages of kidney disease. The fact that it is a sign of poor kidney function, fits many of my symptoms like dizziness, weakness and sleepiness, and couple with my abnormal GFR results to me rings alarm bells. My GP, though, is still totally not bothered! It seems that you only get to see a renal specialist if your kidney function is under 40. I’m sure that if they caught chronic kidney disease earlier and tried to find out the underlying cause and treat that less people would wind up in end stage kidney disease and on bloody dialysis! There is zero preventative health care here in Britain and it drives me insane.
I’m a very cautious person who tries to manage my diseases using proven scientific measures. I do worry about all the people out there who put themselves on all manner of supplements and hugely restricted diets without involving their GP and having the effects regularly monitored. If you’re swigging Gaviscon, eating Rolaids or taking magnesium supplements you really should have your magnesium and potassium levels checked regularly. Ditto B12, folate, protein and iron levels if you need to be on any kind of restricted diet. If you are on drugs for stomach acid like PPIs or H2 blockers this can interfere with the absorption of nutrients like iron and B12 so again you should have a yearly blood draw. I know this is hard to achieve here in the UK where we can’t just ring up and request a blood test so it’s important to be firm with your overworked and stressed GP – it’s your body.
Having said all that I probably won’t do anything about my abnormal results, though I’ll probably request my magnesium and kidneys are re-tested in 6 months time. If the results remain the same then I’ll battle my GP on referring me to a specialist to find out what’s going on bearing in mind I have mast cell disease which predisposes me to all sorts of potentially serious complications and about which my GP admits to knowing absolutely nothing just as she admits to knowing nothing about my Ehlers-Danlos and the complications of that.