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.