Normal test results

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.

 

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10 thoughts on “Normal test results

  1. Sarah

    Same has happened to me. I was so excited during an ultrasound scan when they could see gallstones. I’d suffered for over a year as my pain reffered to my back. i ended up in hosptal 5 times due to infections in it (they won’t remove it if infected due to risk of releasing the infection into your body). I have been diagnosed with fibromyalgia but I suspect it to be Hypermobility EDS as when I went to the support group, my symtoms were different. No one had sinus tachycardia.
    I am now told they won’t give me a diagnosis for my various complaints instead they will treat the symptoms. Aargh, I’m the sort of person who needs to know. Also if you have a name for it people can google it. I’m allergic to most plastics, can’t drink plain water, can’t hug trees anymore as it will bring me out in a rash along with the cold. I went to see a dermatologist 60 miles away about the rash. When I told them my host of other symptoms they got excited and tested for mastocytosis but the tryptase tests came back as normal and that was that. Still get the symptoms though. I suspect i have MCAD. Been tested for sphincter of oddi dysfunction or SOD which makes me giggle everry time (I’m in my 40’s too!). There are 3 types, 2 come back positive 1 type you can’t test for. Mine came back normal so wouldn’t do the procedure. So left in pain and puking. I think it’s down to a rush of histamine as by chance I tried piriton at the first stage and it calms it down most of the time saving a trip to A&E. Plain water is a trigger so have to drink tea.
    So I know how you feel. I too was told some were psychological. I didn’t leave the house for 2 years. Persistence and seeing a psychologist who agreed with me it was not psychological, got me the treatment I needed, but i still hate to go to see drs at the hospital. It’s actually left me with extreme anxiety. I’ve been misdiagnosed a few times, once when I actually had cancer, so no they are definitely not gods!
    I feel, once you have a diagnosis of fibromyalgia, every symptom is explained as being that and not investigated. Lazy drs. You have to fight to be heard. Also having ME that’s exhausting and have to find a “good day to do that”.

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    1. Jak Post author

      Yep, your history sounds a lot like mine Sarah 😦 I dread to to think the misguided psychological labels which litter my medical notes and which haven’t been erased now we know what’s causing my symptoms. It’s so unfair. I was initially diagnosed with Hypermobility Syndrome, but when I attended a support group it was obvious I had much more extensive symptoms than they did and I knew I had hEDS. And like you at the Regional Allergy centre they ruled out mast cell disease because my tryptase was really low and MCAD isn’t yet well recongized on the NHS, which is how I ended up having to pay to see Dr S.

      I react badly to water too, but for me it turned out to be because it was cold. I used to keep it in the fridge and my throat used to itch like hell/tingle/burn after I’d drank any. I now keep it on the counter so it’s warm and am fine with it.

      You’re right, it’s so important to have a correct diagnosis. If you do have hEDS and not Fibro the management it totally different. I wish I’d started wearing joint support years earlier as I might not have done quite so much damage to my ligaments 😦

      Jak x

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  2. Jennifer

    It took me years to find a primary care physician that was old enough to know something and wise enough not to pretend to know it all. My GI doctor really listens and believes me. That’s a miracle in my mind. She sent me to be tested for SIBO in Los Angeles and of course it was positive. I’ve had trouble since Samoa in the 1970’s with some parasitic bacteria.

    They treat us like we’re overly sensitive and emotional which just isn’t me. The young nurse in the hospital was an idiot and thought my just eating one brand of vanilla ice cream for three weeks was a mental problem. They sent a psychologist in to question me to make sure I’m not an anorexic. Then I ate eggs for her and big blisters started forming immediately. If not for my skin issues I think no doctor would believe me. All my allergy blood tests came back negative. I have mast cell issues and angioedema they can see, otherwise the doctors would just keep giving me Valium or Xanax. I still hear “it’s stress” from many doctors.

    We just have to keep doing our own research and keep hoping there will be help some day. There is a new drug coming out for skin issues other than psoriasis. I’m so hungry I’d take anything at this point even if it kills me. My 3 sisters have some issues. Some of my birth daughters and at least one grandson. My goal is not to die before I can help the next generations know a lot more about how it’s all connected. My 17 year old grandson is already learning how his symptoms are provoked by certain foods. Some reactions happen lower in the intestines so it seems unrelated if you’re not aware.

    I’m grateful for websites that talk about these issues openly. It helps to realize we’re not out here alone. Keep asking questions and pushing for answers. It’s easy to give up. Maybe take a break but then go again and again and again. Your knowledge could help the next person or generation. For that I truly am grateful.

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    1. Jak Post author

      Thanks for the comment Jennifer and I’m so pleased you’ve finally found a Doctor who listens to you. I think most of us have had the “stress” or “anxiety” label pinned on us at one stage or another. At one point when I was hospitalized with severe M.E. and was struggling to eat anything solid the Doctors were convinced I was anorexic and called in the psychiatrist. I was bloody starving and simply was too weak and ill to chew and digest solids for heaven’s sake! The unfairness of that still makes me furious.

      As you say, we are pioneers for future generations and I hope they never have to go through what we have.

      Jak x

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  3. Lori

    Wow. You are channeling my distress! I’m one of those folks as well – sick as hell with “normal” test results. For example, I had “mystery” back pain for 12 yrs after a car accident, until I found a doc that did a neuroimaging test that showed my genetically split piriformis and split sciatic nerve – and had neurosurgery to partially fix it, but THAT op increased my joint hypermobility in my SI! And my list of stories go on and on…
    Docs don’t seem to test as often as they used to, and because my tests from the past 40 yrs didn’t show problems all of the time, I’m not treated. Even though I WAS treated back in the 90’s – this “evidence-based” diagnostic movement has caused the docs to strip all of my diagnoses and just treat me like a hypochondriac…yes, despite the plethora of “normal” bloods, X-rays and MRIs in the recent past that missed things like avascular necrosis in my hip, large fibroids filling my uterus, anemia, elevated prolactin levels and a pituitary tumor.
    I really wish a could find a doc that treated NE as a human being, and didn’t treat me as a member of collective females aged 45-55 throughout the world. I’m me, not a data point in a statistical experiment, dammit.

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    1. Jak Post author

      Couldn’t agree more Lori. I think that was one of the most powerful parts of Jennifer Brea’s TED talk on M.E. for me, ie how adult women are treated by the medical profession and how much we are psychologized (for want of a better word) compared to men and children. How we are viewed as emotional and hysterical females and how likely our physical ailments are to be put down to psycholgical problems 😦

      Jak x

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  4. Lisa

    I spent several hundred thousand dollars out of my on pocket to find answers finally, after being treated like crap by doctors.

    Sarah and Jennifer-
    I have been dx’ed with Mcas, Fibro, Cfs, autoimmune diseases. I also have type IV contact skin allergies to many things that caused allergic contact dermatitis. Go to a good Dermatoligist and have 5 day skin patch testing done.

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  5. Jennifer

    I’m seeing an allergist/immunologist May 8th and trying to get skin test. My GI doc recommended him to me. He’s practically right around the corner from me too.

    I’ve spent over $100,000 because my husband has always been self employed and I didn’t work outside the home until 2000. My favorite doctor over 2 hours away by San Diego doesn’t take insurance but lets me do phone appointments. I work for a large coffee company that has great benefits for anyone working 20 hours a week but keep losing insurance because I’ve been too ill. I can have COBRA and keep my insurance for 18 months but I pay my portion and employers portion. It’s still cheap considering my health. Most people I know spend money out of pocket because they want alternative doctors and got the most help that way. I save $1000’s on food though since I can’t eat and can’t socialize. I sit as much as possible on my 3 days off to conserve calories and keep my adrenals calm.

    At work and after I take an H-1 and H-2 blocker but both are on the list of dementia causing meds. I keep hoping a safer med will come out. Herbs make me itch so I can’t take Atrantil which I want to use for SIBO. As I’ve read on this blog and others what works for some doesn’t always work for others. We just have to keep trying and hope the reactions are minimal.

    Reading this blog is helpful and encouraging even if I am too tired to comment. Seeing the photos and hearing about the awards is a blessing too. Keep up the good work.

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    1. Jak Post author

      Scientists have no idea what causes dementia Jennifer so information that antihistamines cause the disease is nonsense and I wouldn’t worry about it for another second. Jak x

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