What If My Doctor Missed Something?

I caught up on Facebook with a blogger I had lost touch with.  She had been searching and pushing for a real diagnosis for a long time as Fibromyalgia and CFS didn’t fit with all her symptoms and test results.  Now she’s pretty sure she has Hypereosinophilic Syndrome.

pic by akay

eosinophil by akay

Hypereosinophilic Syndrome (HES) is a ‘rare’ blood disorder where the eosinophil (a type of white blood cell) counts are raised and it can effect people in different ways.  It can cause damage to multiple systems commonly heart, lung and neurological.

General symptoms can include (but a patient may not have all) fever, fatigue, cough, rash, diarrhea, neurological problems, nausea and vomiting, difficulty swallowing, shortness of breath, cough, cardiac symptoms and abdominal pain.

There’s a good youtube video with some real patients telling their stories.

It’s easy to see how you could be suffering with HES (considered a rare condition), and have a general practice doctor put it down to Chronic Fatigue Syndrome (CFS).

So it got me thinking.

It got me thinking about how hard this lady has worked to find a diagnosis. You could see that as desperation in a way, to not face a diagnosis of FMS or CFS, which has little in the way of treatment.  But although  HES can respond to treatments like prednisone it has no cure and the damage to your systems can lead to death.  So it’s not exactly a condition you would choose to have!

It got me thinking about the 4 or 5 people I’ve encountered online who have been diagnosed with CFS or FMS only to have been misdiagnosed when a different underlying condition has been discovered 1-10 years  (or more!) later.  Not to mention the number of people I have encountered casually online who have turned out to have other conditions.  

Their “real” diagnoses have included:

photo by Janneke Hikspoors

photo by Janneke Hikspoors

Maybe rare conditions are only rare because so many people get misdiagnosed with things like CFS?

So I do wonder from time to time – what if my doctor missed something?

I’ve only had the care of one doctor (who I call my Friendly GP) consistently since she diagnosed me with CFS in Jan 2007.  Before that, when blood tests were being run and I was describing my symptoms, I saw 4 or 5 different doctors in my practice.  I’d like to think that gave me multiple trained eyes on those test results but I’m actually left with a fragmented feeling about the whole diagnostic process. Especially those 4 or 5 GP’s were seen over the course of a year before Friendly GP finally suggested CFS to me.

This feeling sometimes manifests as a fear of discovering there is another cause to my symptoms than ME/CFS and what if there is (or was) a treatment?  Is it possible to have lost 3 years to debilitating symptoms that could have been treated and controlled?

There were abnormalities in my blood tests in 2005/6 – namely that my red blood cell count was consistently high.  At the time I was quite anxious about this but had the results dismissed fairly casually by a doctor as “high is probably just your normal”.  I got the impression they weren’t ridiculously high – although they were high enough to repeat the test 2 or 3 times over 6 months.

He is probably right.  But probably doesn’t seem quite good enough all of a sudden.  Not when so much is at stake.

I did a bit of reading and found articles about raised red blood cell counts that I didn’t find back in 2006.  Articles which suggest that a consistently raised red blood cell count should be investigated further to check for possible underlying causes.

photo by chatiryworld

photo by chatiryworld

These include tests I ‘ve never been given:

  • measurement of iron, folic acid and vitamin B12, which are all important in red cell production
  • oxygen levels in the blood
  • chest X-ray to check that the lungs and heart appear normal
  • ultrasound of the abdomen to check the kidneys, liver and for any increase in the size of the spleen or fibroids in the womb

There are simple explanations for high red  cell counts which include being overweight, high blood pressure,  dehydration, alcohol and stress.  But it can also  have other serious causes like kidney disease, tumours, endocrine abnormalities, liver disease, sleep apnoea, heart disease or a bone marrow disorder.

The medical name is  Polycythemia.

I’m not saying I have any of these serious causes and maybe the doctors I saw were aware of further diagnostic criteria which meant they could be ruled out just by looking at me.  I don’t even know if I still have a high red cell count as I’ve not had a routine blood test since.

What I am saying is I’m not sure whether these possible causes of raised red cell count were considered at all at the time.  Plus questioning the decision that this was my normal and not to continue to monitor it when you factor in all my ME/CFS symptoms.

A high red cell count can actually result in a lack of oxygen being carried around the body.  That could account for all of my symptoms if blood flow and oxygen levels are reduced to my brain and other systems.  This extract relates to polycythemia caused by bone marrow disorder:

The excess number of cells in the bloodstream lowers the amount of liquid in your blood vessels. This makes the blood more viscous (thicker), so it flows less easily, especially through smaller blood vessels.

Many symptoms of polycythemia vera relate to the increased viscosity. Common complaints include headache, dizziness, noises in the ear, blurred vision and fatigue. In most cases, the spleen is enlarged because of the increased number of cells being recycled there.

More from this article

I am not self diagnosing.  I’m just wondering if  I should have been referred for further investigative tests or at least  further monitoring.

photo by Leo Reynolds

photo by Leo Reynolds

So I wonder, could I still have high red cell count and lack of blood oxygen to vital systems which manifests  as neurological problems, headaches, fatigue and digetive problems?  Or is it M.E. that causes the problem with my blood oxygen and my body tries to compensate by creating more red blood cells? Or is the red blood cell thing just normal and not a factor? Or another of a myriad of possible explanations?

It’s a bit chicken and egg.

I think about Ashy with her POTS – does POTS cause the ME symptoms, is POTS a symptom of ME or does she have POTSand ME together?  And RachelM with her asthma symptoms, breathing problems and OI – do they cause some of the ME symptoms or are they a result of the ME? 

I hope research can provide answers and do so fast enough to help us all.

I think it may be time to ask my friendly GP to re-run my blood tests.  Question is if I ask her to look particularly at some rare conditions to rule them out will she welcome my internet research or see me as one of those “difficult” CFS patients with too much time to surf the net?  Only one way to know I suppose.

Can I afford to risk missing a diagnosis for the sake of upsetting my doctor?

pic by Ethan Hein

pic by Ethan Hein

But then if all my symptoms were just the result of too many red blood cells wouldn’t they have spotted that?  It does seem too simple an explanation to be realistic.  

I’m not grasping at straws here.  Because I’m not offered any tests to confirm ME it’s not unreasonable to want to feel confident that diagnostic criteria which can be ruled out are done and that my doctor looks at all possibilities.

As my own GP said “it’s important to have faith in the diagnosis” otherwise it’s very difficult to live with it.

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8 Responses to “What If My Doctor Missed Something?”


  1. 1 Renee March 26, 2009 at 1:34 pm

    Sounds to me like you need these tests run so as to rule out or in other causes…in order to have peace of mind. Nothing wrong with that. Your doctor’s goal needs to be making sure your diagnosis is correct..or has not CHANGED. I was diagnosed with CFS in 1991 just learned 21 mo ago it was Lyme Disease that is the underlying cause of my CFS…Don’t worry about yoru doctor getting upset? You PAY her to be your doctor and if she really cares about you….she will follow through without taking things personally….
    Renee

  2. 2 rachelcreative March 26, 2009 at 4:18 pm

    Well I don’t exactly PAY her as she is a National Health Service doctor but I agree with your sentiment. Peace of mind is the right phrase. I could have made that blog post so much shorter 😉

  3. 3 joanne60 March 26, 2009 at 6:22 pm

    I was diagnosed with ME/CFS but a chance course of antibiotics for chest infection improved my arthritis/muscle weakness which led my GP to suspect Lyme Disease. The tests were negative but then they can miss up to 75% of cases. I eventually consulted with someone privately who confirmed my diagnosis. After long term antibiotics I am significantly recovered and can after 3 1/2 years walk upstairs again. My total illness is 6 years. What a waste.

    There is a ME/CFS doctor in Bolton who finds many of his ME/CFS patients are sufferring with Lyme Disease and on appropriate long term antibiotics recover.

    There is much controversay about the diagnosis and treatment of this illness and so it is difficult to find NHS doctors who are prepared to treat adequately.

    The smallest tick is the size of a poppy seed so we are not always aware when we have been bitten.

    See UK charity website http://www.lymediseaseaction.org.uk if you want to read more about this illness.
    Join Eurolyme a chat line where several of the people have previousl;y been diagnosed with ME/CFS before being diagnosed with Lyme. Even the NICE guidelines say Lyme Disease should be ruled out before a diagnosis of ME/CFS is made. How many doctors even consider it as apossible diagnosis or realise that a negative test does not mean you have not got lyme.

    best wishes Joanne

  4. 4 rachelcreative March 26, 2009 at 7:43 pm

    My GP was happy to test for Lyme once I asked for it. But the practice nurse I saw had only taken blood for a Lyme test once before (a long time ago) and had to consult with a GP to see what needed to be taken/paperwork filled out. Then the lab rejected it saying they don’t normally do Lyme tests so were they sure? My GP had to contact them and insist the test was required.

    It’s crazy when Lyme is so easy to contract in the UK.

    And even after pushing for the test it’s never totally conclusive because of false negatives.

    Is it worth pushing for another Lyme blood test?

  5. 5 ashysheela March 26, 2009 at 9:40 pm

    Some very valid points raised here, rachel. I think it is acceptable to ask for repeat bloods every year or two, as it is easy to miss new things when we have so many symptoms in general. Simple aneamia could develop and drag us down further… no harm in checking. As for asking them to check for rare diseases, good luck to you… it goes against the NICE guidelines to do anything more than the basics, eh?

    I asked my doctor if i could have Lyme disease and took some info to her about it, in which it did say that the tests that the NHS use are not conclusive. My doc said, “so what do you want me to do then if the test is no good”? So i said, “maybe reassure me that i don’t have it”? She said “has your spleen ever been enlarged”? I said “No”, so she said it was unlikely!! Well, that’s that then 😉 I decided not to pay for a reliable test myself, i kind of feel if i start getting tests done, where will it end as there are so many i could have…

    I also wonder if there is something detectable that could be treated that is at least contributing to my condition, especially as i now know i have POTS and there are so many people with these symptoms that have no idea that it has a name and that even if not widely available or completely effective, there are treatments and things that can help with it. How many other aspects of this illness (or illnesses) are potentially treatable already? I think as i have been ill for longer and longer i kind of trust the diagnosis a bit more (for what it is worth) as although it has been worse lately, i have not degenerated as much as i would expect to with some of the nasty things that people find they have after an initial CFS diagnosis! But who knows?

    How much you push your GP to take these things seriously depends on how much energy you have and how many raised eyebrows you are prepared to see. Every time i mention the internet i get the rolling eyes, but who can blame us for looking when we get so little from the medical profession?

    In the end i find it is easier to just not think about it as we never get many definite answers and worrying can cause anxiety and stress… i was imagining the lyme disease things wiggling in my blood at one point! Not healthy…

  6. 6 Jozephine March 27, 2009 at 1:04 pm

    Very interesting post and discussion. In the doctor’s surgery I often find myself apologising for my ‘hypochondria’ as, for many years, I had a very judgemental GP who made me feel embarrassed about all my symptoms. More recently I’ve found GPs are more interested in what they call my ‘health anxiety’ and are keen, both to put my mind at rest, and to check there is no underlying problem. They know the stress is damaging in itself.

    After going down the ‘they must have missed something’ road myself I’m now fairly, although not completely, happy to accept that it’s CFS caused by chronic and extreme stress. However, I haven’t been checked for Lyme . . . .

    I’m with everyone else, get checked if only for your peace of mind. If they kick up a fuss ask them what they would do in your position. It’s OK to be an expert patient.

  7. 7 Sue March 27, 2009 at 2:14 pm

    Wow, what an interesting and thought-provoking post. You bring up a lot of good questions.

    In my case, I searched for a diagnosis for a full year after becoming sick – I saw a dozen doctors in different specialties, had so many blood tests I lost count, and was even misdiagnosed with Lyme at one point. When I first heard about CFS/ME after being sick for a year, I was stunned because it was the first thing I’d come across that actually matched ALL of my symptoms exactly. So, I felt pretty sure of my diagnosis, but I can see how you might have concerns if you hadn’t been through such a rigorous process at the start.

    As for Lyme – which I just got last summer and am still being treated for – you should consider it if joint pain and/or severe cognitive dysfunction are part of your symptoms. In that case, it’s very hard to tell it apart from CFS/ME. The antibody tests do have a lot of false negatives (I never had a positive test this past year). A Lyme PCR test is a little better, though still not 100%. It looks for the actual DNA of the Lyme in your blood. Problem is, the little buggers don’t always hang out in the blood; they often “hide” in tissues, so blood tests aren’t always accurate. Many Lyme specialists feel the only true test for Lyme is to try antibiotics (doxycycline) to see if there’s any response. This is how I knew I was misdiagnosed with Lyme that first year – no change at all after 90 days of doxycycline – and also how I knew I DID have it this past year – I tried doxy and immediately felt 100% better, then went into a period of feeling much worse (a herx reaction – a sign the abx are working).

    Some of the other things you mentioned – hypercoagulation of blood, OI, POTS, etc. – my understanding is that those conditions result from CFS/ME. The immune dysfunction and endocrine dysfunction cause a whole cascade of problems/conditions that can get worse over time. Research shows that at least 95% of people with CFS develop OI (POTS and/or NMH), so almost everyone with ME can benefit from treating OI.

    If you have any doubts or concerns, I would encourage you to talk to your doctor. Besides the possibility of having missed something, my own doctor is always reminding me to ask her about any new or changed symptoms. She says, “Just because you have CFS doesn’t mean you can’t get something else, so check everything out.” Good advice, I think.

    Thanks for the very thoughtful and interesting post!

    Sue

  8. 8 cusp March 27, 2009 at 2:23 pm

    Hi Rachel. I think we all wonder from time to time if the diag. is right. After all our GPs have usually come to their decision by a diagnosis of ‘exclusion’ and how many tests and what not would they have to do before they’d excluded everything else it could be? I think a llot of their diagnosing is hunch and guesswork and if, like me, you’re out in the sticks, there just aren’t the services or resources to cope iwth the sort of complex needs we have. The other danger is that whatever symptom you have is often (alwyas ?) put down to M.E. On the other hand I reckon that my GP is right and he does, on the whole, have my best interests at heart — even thoug I curse him from time to time.

    At the moment I’m having all sorts of digestive problems and blood sugar problems but apparently it’s all down to my M.E. — and I have had all sorts of similar probs in the past — so maybe the GP’s right.

    Re.the Lyme issue, you might find this blogger’s post interesting:

    http://livewithcfs.blogspot.com/2009/03/cfs-and-lyme.html

    and also this blog too:

    http://salter840.blogspot.com/


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