I’m the healthiest sick person you’ll ever meet. Despite having Spinal Stenosis, MCAD and EDS from birth, M.E., Histamine Intolerance, Endometriosis and Adenomyosis 98% of all my test results have come back “normal”, at least according to my Doctors. It will not surprise you that my response to that is “knickers!”.
When I was 11 I was climbing in some outbuildings and fell from the first floor onto the bonnet of a car, after which I developed back pain. For the next 5 years I went backwards and forwards to the hospital who could find no reason for my symptoms. X-ray results were “normal” and eventually I was told I was “attention seeking” and needed to see a shrink. I refused and demanded a second opinion from an Orthopaed at a decent hospital 90 miles away (I was bolshy even at 16 😉 ). Within 48 hours of being admitted they discovered I had been born with rare congenital spinal stenosis and urgently needed a laminectomy. The fall wasn’t the cause of my back issue but had just aggravated a pre-existing condition.
This was my first experience that Doctors aren’t Gods and sometimes get it wrong and over the coming years I was to discover that they get it wrong more often than any of us would like.
It’s only in the past 5 years or so that NHS patients in the UK have been given access to their test results. Historically, GPs would take loads of blood, not even tell you what you were being tested for and the results were sent back to the GP who only ever rang you if something abnormal was discovered. But a GP’s idea of “normal” results and my idea of “normal” results seem to differ.
As I’ve discussed recently here on my blog, at the tail end of last year I started having symptoms of anaemia so asked my GP to check my iron levels. They came back 1 point above the very bottom rung of “normal” (normal range 17-160 according to my lab sheet, and my result was 18), so my GP considered that fine. Only of course it wasn’t fine because I was having symptoms. I took it upon myself to start some supplements and within a week the pallor, exhaustion and daily dizziness I’d had for months vanished. But if hadn’t gone to the surgery to request a print-out of my results and seen that my levels were low my GP would have just said everything was “normal”, I wouldn’t have tried the supplements and would have continued to feel like death warmed up.
When I saw Dr Seneviratne for my histamine/creatinine test it was high but within the “normal” range (normal is 34-177 and mine was 140). However I’d been on a low histamine diet for 4 months at that stage, which one would hope would lower my histamine load and therefore skew the result, plus was symptomatic (at the time of testing my bum was covered in hives). So thankfully Dr S still diagnosed me with “probable” MCAD because my history fairly conclusively suggested it. But not all Doctors think like that – they see “normal” test results and rely on those, even when all the evidence is pointing towards there being a problem.
I’ve had severe gynae pain since the day I started my periods and over the years have had various tests and scans all of which were “normal”. Well, apart from the fact my first ovarian scan showed a 2cm cyst which I was told was cyclical (they know this how?!) and 12 years later my second ovarian scan showed a 5cm cyst. Turns out I have polysystic ovaries and due to my endo some were blood filled and when they burst caused excruciating pain and adhesions My first pelvic MRI at my local hospital showed absolutely nothing untoward, yet an MRI at a specialist endo centre six months later showed extensive endometriosis which even I could see on the scan! So it turned out that the excruciating pain I’d lived with for the better part of 40 years wasn’t “normal” after all and I needed an urgent hysterectomy.
Anyone with Hypermobile Ehlers-Danlos Syndrome will tell you how painful and disabling the condition can be, yet nothing shows up on tests. Genes and skin are normal, as are scans and x-rays. Before I suspected hEDS I was told by medical staff that I was just “sensitive to pain” which made me feel like a total loser – little did they know I lived with pain most days that would have a healthy person reaching for the Vicodin and I did it without so much as a murmur, so far from being sensitive to pain the opposite was, in fact, true.
Here’s the thing I wish Doctors took more on board – if a person is having symptoms there is a problem, even if test results look “normal”. I wish they’d listen more to what we’re telling them, take a full history and trust that we know our bodies better than they do. What is “normal” for a 6ft 4″, 16 stone, male, thirtysomething rugby player might not be “normal” for a 5Ft, 7stone, teenage girl.
Back pain at the age of 11 is not “normal”. Gynae pain so severe you’re curled up in the foetal position every month is not “normal”. Fainting is not “normal”. Widespread pain is not “normal”. Seizures are not “normal”. Fatigue which puts you in bed by 4pm every day is not “normal”. Collapsing after every meal is not “normal”. Flushing is not “normal”. Daily nausea is not “normal”. I don’t care that all my tests indicated nothing was wrong, because something clearly was and it wasn’t something trivial to cause that much havoc.
My cynicism towards the medical profession is now legendary – that’s what comes of being fobbed off or 40 years that all is well. In the end, I had to guess what my diseases were and inform my Doctors, who then did the relevant tests which, surprise!, came back not normal in any way 😉 I trusted my instincts, even though when I was younger I didn’t have enough confidence to challenge my Doctors. I know there are some people who are hyper-vigilant and obsessive and who think they have some dreaded disease from every little ache, pain and niggle (I’ve met some of them online!) but I know my personality and know that I’m not a drama queen or someone who focuses abnormally on my body (again, the opposite is true and I actually ignore symptoms when I really shouldn’t!).
These days I’ve gained a fair bit of knowledge about my body and I know what’s normal for me and what’s not. If I’m not happy with a consultation I’ll research the best doctor to see and request a referral even if it’s hundreds of miles away (which is my legal right). I request a copy of my test results and will push for treatment or further testing if I think it’s needed. After all, I’m the one who has to live in my body and suffer my symptoms, not my Doctor.