A double misdiagnosis and the dangers of Chronic Fatigue Syndrome

Hello there everyone,

Yesterday I went to my local hospital to see an endocrinologist because my rheumatologist had spotted something unusual when he asked for a wide range of blood tests that included a scan of my hormone levels.

He discovered that I had an abnormally low level of testosterone in my system.

Going back to my childhood when I was a patient fro nine months at the now closed Canadian Red Cross Memorial Hospital, Taplow, Berkshire; I had been treated for borderline osteoporosis.

To cut a long story short, I have now been diagnosed as having Secondary Hypogonadism which means that my pituitary gland has been malfunctioning for many years and because of this I have been living with abnormally low levels of the hormones that the pituitary glad is responsible for putting into my blood stream.

The major symptom of this is fatigue and mood swings.

My doctor is now concerned that I might have a pituitary tumour so I am to have several scans including an ultrasound scan, MRI scan and a bone density scan.

The history of what could have been identified and a GP bothered to read my notes has been in my notes on and off for many years.

However, GP's don't seem to bother to read patient notes these days so when I got wrongly diagnosed with Chronic Fatigue Syndrome back in 1996, any thought that the fatigue could be caused by a treatable pathology was effectively cut off because "fatigue" became a diagnosis within itself.

I am in my 50th year and I am single. I have always had trouble forming relationships.

As of yesterday I now know why?

It goes without saying that I now know that I have been living with not one but two causes for my fatigue because I still have Behcet's disease that has been cohabiting with Secondary Hypogonadism.

I will now have to go onto hormone replacement therapy for therapeutic reasons for the rest of my life and this will include annual tests and a checkup to ensure that I don't end up with prostate cancer from the side effects of the treatment.

This all leaves me with the knowledge that being given a diagnosis of Chronic Fatigue Syndrome can be highly dangerous because once they say you have CFS then any alternative cause of fatigue is effectively ignored.

On the 25th of February I am attending an event at the Scottish Parliament organised by Rare Disease UK.

I am attending with a member of the 25% ME Group - a charity for people who suffer severe ME or CFS as the NHS insists on calling it.

I am still pushing on with my misdiagnosis project I I shall be raising awareness about the sorry state of diagnosis in the NHS and the dangers of misdiagnosis in relation to Chronic Fatigue Syndrome.

Having found out that I have suffered a double misdiagnosis just reinforces my belief that the CFS diagnosis is simply flawed and unsafe as far as the patient is concerned.

I'll send a further report after the conference at the end of this month.



12 Replies

  • I know that it's to little to late but I'm really pleased that you found out what's wrong at last I think CFS is the Dr's get out of jail free card when they can't be bothered to investigate.

  • Oh Stephen,

    Firstly, I am sorry this has happened to you, this goes without saying.

    Secondly, it is arguable that the loss you have incurred in terms of relationship problems (loss of chance) was reasonably preventable and as such is grounds for litigation. Please see a lawyer.


  • I really sympathize with you as my Behcets syndrome took nearly 10 years to diagnose and now am positive that i have Fibromyalgia too which hasnt been diagnosed yet but i do have it.They seem reluctant to diagnose a patient with more than one condition seeming it not possible which is rubbish!Also the biggest problem is that not enough students are choosing to study medicine ,causing a big shortage of doctors/specialists out there causing large back log of patients.

  • Sorry to hear you have had yet another blow. At least now you have finally got a proper diagnosis and will get the correct treatment for the condition you have.

    I was misdiagnosed myself before finally getting diagnosed with BD.

    Good luck with your new treatment and the conference at the end of the month.

    Clare x x

  • I was diagnosed with having Fibromyalgia then later diagnosed with having Behcet's then my flareups got worse and then I was sent to see a Rheumatologist who's report said no sign of Behcet's and after 4 visits and seeing 4 different

    doctors at the surgery the 4th doctor has got me appointment to see a specialist in London's St Tomas Hospital and it was with Rheumatology but have now changed it to the Lupas Unit my mind is all over the place and with having my Incapacity stopped and made to look for work and now put on a course the stress is making all my systems worse and all I have been given to take is Tramadol it helps me to sleep but dose little to help me with the pain and after a couple of hours of taking it my body heats up and I sweat then I wake up and find it hard to get to sleep again I feel this is my last hope of getting a propper diagnosis when I go to London

  • I attend the Lupus Clinic at St Thomas Hospital...this is where my Behcets was confirmed as my Consultant who heads this clinic, also has experience with Behcets and vascilitis

    If it is the same clinic and consultant you should be in good hands...good luck with this

  • Thank you I will post the outcome after I have been tomorrow

  • Hi Stephen. I am so sorry. It must be a blow to have a second horrible diagnosis, but I hope the frustration and anger you must be feeling is coupled with a sense of relief now you have more clarity.

    I was diagnosed with Behçets 3 weeks ago. The consultant's letter to the GP said that the Behçet's was 'possibly complicated with chronic fatigue'. The GP who originally diagnosed my CFS in 2000 is defending that diagnosis and stated this morning that 'he is willing to accept a diagnosis of probable Behçet's' (the CoE letter said that I fit the criteria, with nothing about 'probable') and kept saying things like 'well, people like you with CFS are ultra-sensitive to drugs' when we were discussing Colchicine etc. I get a sense that the GP suspects I got the Behçet's diagnosis on the basis of describing symptoms I had read about, when it was actually made on the basis of three months-worth of photographs of ulcers and skin lesions. (It was sod's law that I had none when I actually went to the CoE).

    My main concern is that I do get some neuro symptoms that weren't picked up on my first visit to the CoE - the investigations done that day were all to do with seeing whether I fit the general criteria rather than around my particular subset of symptoms. I was referred back to the GP but now it is apparent that he is muddying the Behçet's with the CFS, I am concerned that when I talk to him about the headaches, numbness, tingling, balance and speech problems I have during my flares, he will pass them off as CFS (as he always has) and demur about referring me on.

  • Hello there Jaxxi, it's really interesting to read how your GP is trying to defend the CFS diagnosis almost as if he knows that a misdiagnosis could mean trouble for him professionally should you make a complaint.

    But very simply "Chronic Fatigue" is a feature of Behcet's just as "Chronic Fatigue" is a feature of Parkinson's disease, Multiple Sclerosis, COPD, heart disease, HIV/AIDS, Ankylosing Spondylitis and all manner of other diseases.

    Also, Your GP is no Behcet's specialist so he will not be able to appreciate just how profound the effects of Behcet's disease are in terms of the "Chronic Fatigue".

    And it sounds to me that you really could do with changing your GP to escape his limited circular thinking.

    When I moved here to Scotland, my GP referred me to a specialist over in Dundee because I asked him if he could refer me. In doing so he sent the specialist so much misleading documentation relevant to my previous CFS diagnosis that I did not stand a chance of being re-diagnosed. That specialist treated me as though I was a waste of space and/or mentally ill.

    I had to complain to the Health Authority and then the Heralth Authority contacted my GP to get his opinion.

    My GP actually tried to prevent me from having any further specialist referrals by advising the Health Authority that I had already had 10 clinical referrals over the last 4 years but said no more about why?

    I had to put it to the Health Authority in writing that as I had a CFS diagnosis I still needed to be under specialist care so where they now going to deny me any specialist care as I had the CFS label at that time.

    The Health Authority then backed down and said that they were not trying to deny me specialist care. After a meeting with my GP and a representative of the Citizen's Advice Bureau at the surgery, my GP granted me a further referral to a local general rheumatologist.

    That rheumatologist quietly re-diagnosed me as having possible and then definite Behcet's disease after reviewing all the evidence I presented in terms of photos and responding to Colchicine. All that evidence had been collected from advice I got from the BSS and from my previous GP down in Lincolnshire.

    All in all I had 11 clinical referrals to 9 specialists over a 4 year period and I had to keep on forcing the issues until they were finally addressed in the right context.

    I never lodged a complaint about that GP here in Scotland but in view of my new diagnosis of Secondary Hypogonadism I will now probably lodge a complaint prior to visiting a solicitor.

    Had I not had the knowledge gained from being a diagnostic radiographer and had I not fought my battle by representing all manner of factual evidence, I'd still be misdiagnosed with CFS today.

    The arrogance and the ignorance of some members of the medical profession is genuinely frightening.

    As things are now, I am both very angry but also very relieved that the chickens are now coming home to roost.

    Pretty well all the problems I have faced during my life including substantial bullying at school - have all now been explained.

    Best regards,


  • Hello there Everyone, I'm pretty exhausted today and I'm not up to much but I just wanted to thank everyone here for all your replies.

    It is a really great thing to have the support from this group and I am very lucky to have found this group.

    If I go quiet and if I do not respond to all replies it's only because I'm exhausted.....

    Again - many thanks, Stephen.

  • Hi there, just for the record, my GP has always been very helpful indeed, has always taken me seriously and tried his best to help me sort out what is wrong. I never spoke to him about my ulcers and spots as mine are fairly minor and way back in my teens, when they were more of an issue, I was told they were simply due to being run down and subsequently learned to ignore them. In hindsight a referral to a rheumatologist might have achieved an earlier diagnosis but since 2006 I have been seen by cardiology, neurology, haematology and dermatology specialists, had abdominal ultrasound scans and some fairly esoteric blood tests such as Lyme and parvovirus, so there was certainly no neglect and I would probably not class the CFS as a misdiagnosis but rather the only possible 'holding' diagnosis in the absence of any other convenient label.

    Any fault or failure was I believe not due not to my open-minded GP's set of assumptions but due to the wider assumptions around CFS and the strictures of the NHS in general. While he took me seriously, and made referrals, some of the specialists were very quick to read 'CFS' as 'hypochondriac time waster'. The dermatologist, for instance, diagnosed my skin condition as 'atopy' after a 60-second 'consultation' without any kind of examination. Had she troubled herself to ask me to remove my top, she would have discovered a distinctly non-eczematous outbreak of folliculitis which might have led to a Behçet's diagnosis.

    Of course, after several referrals that had drawn blanks, even though these were years apart, the GP became reluctant to deplete limited practice resources sending me on further wild goose chases, and this was when I began to feel stuck and enormously stigmatised by the CFS diagnosis. Having spent quite a lot of time on various CFS forums globally, it is quite apparent that there are lots of people with lots of different illnesses being consigned to the CFS diagnostic dumpster.

    It is obvious that there needs to be a more intense level of diagnostic scrutiny once a patient has been ill for 6 months and all the initial tests have come back negative, not a less intense one as has been the case in the past. We need a term that denotes 'this person is chronically ill and we don't yet know why, and are still investigating'. Something like Chronic Systemic Illness or Chronic Multifactorial Illness. To ease assessments, the level of debility suffered by the patient could be graded: a CMI 4 would be able to carry out usual daily activities, whereas a CMI 20 would be permanently bedridden. During this period, patients could be offered graded activity / CBT without the stigma, politics and fear of long term disability that are part of the CFS/ME package, which would help many manage whilst awaiting further investigation, or perhaps simply get spontaneously better from their 'CMI'. Further examinations aimed at pinpointing the cause or specifics of the CMI could proceed alongside the GET/ CBT, ensuring that the patient at no time feels shelved or devoid of hope and so less subject to mood/lifestyle disturbances which can exacerbate, confuse and prolong accurate diagnosis. Such a 'holding diagnosis' would give sufferers access to forums and resources designed to help professionals and patients alike explore possibilities (including ME and CFS and rarer illnesses like Behçet's), again adding to the culture of a rigorous and proactive approach to care and treatment of people with long term illnesses that are diagnostically challenging.

  • Hello there Jaxxi, I do understand your logic about this but unfortunately the fact is that liaison psychiatry are presently in almost total control of Chronic Fatigue Syndrome and Myalgic Encephalomyelitis.

    The CBT/GET courses were designed by psychiatrists and their firmly held beliefs are that "CFS/ME" is a functional mental health disorder.

    This mental health belief has trickled down through to general practice which is why GP's only carry out the barest minimum of tests and investigations that will more likely than not come back negative.

    I know people who have been put through CBT and graded exercise and ended up more ill than when they started.

    And it goes without saying that CBT - changing the beliefs about the cause of your symptoms to get you to think your way out of being ill will be totally irrelevant to anyone with Behcet's or other diseases including secondary hypogonadism.

    So we live in a time where the NHS is playing a form of "Russian roulette" with patients because some people die and I know of patients who have died having been misdiagnosed with CFS/ME.

    And sadly there is no realistic chance of psychiatry being taken away from their dominant position any time soon.

    Then again there is the Norway effect where a female patient diagnosed with CFS then went on to get diagnosed with cancer.

    For her cancer she was put onto chemotherapy in the form of Rituximab and as a result her Chronic Fatigue Syndrome progressively diminished which was a total surprise to her doctors who were all expecting her CFS to get worse. As a result of this, serious questions are now being asked.....

    There is now a UK initiative here ukrituximabtrial.org/ and back in Norway the Government are sponsoring a large clinical trial.

    So there may be change on the way and when change happens there will be thousands of very angry patients wanting to take liaison psychiatrists and the NHS to court.......

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