Until February 2013 I was oblivious to the fact that for my whole life I had been living with an undiagnosed pituitary disorder called Hypogonadotropic Hypogonadism (HH).
Having now gone through the entirety of my medical records it is clear to see that from the age of 20 years, I had been reporting periods of unexplained chronic fatigue.
I used to be a keen touring cyclist until my health collapsed completely in 1996 following a severe viral infection. I had previously reported that I was not recovering from long cycle rides with my club.
I was diagnosed with ME/CFS in 1997 and following that diagnosis, my entire medical history became effectively null and void.
I was forced to retired from my career as a diagnostic radiographer.
All my symptoms were simply deemed to be caused by "CFS/ME" and there seemed no way out.
By 2008 I had endured being housebound, bedbound due to severe fatigue, musculo-skeletal pain and migraines along with a G.I disorder and I had seen nearly a dozen specialists but one doctor noted that I had a history of occasional mouth ulcers and knee inflammation at night and I was diagnosed as having Behçet's disease.
In September 2013 my rheumatologist told me that he thought it worth checking all my hormone levels because he recognised that "chronic fatigue" could be caused by abnormal hormone levels.
When those tests came back it was found that I had abnormally low levels of testosterone and I was referred to an endocrinologist.
In February 2014 I was told I had been living with a pituitary disorder from birth.
In June 2014 I was told that I had been suffering from osteoporosis - probably for my entire life.
My medical records reveal that II have suffered numerous bony fractures including a crush fracture of my T8 vertebra back in 1977.
However, it now remains clear that numerous GP's and specialists alike have never read my medical records because if they had, they would have seen the evidence to at least check to see the status of osteoporosis that had been discovered when I was 15 years old.
The simple fact is - both Behçet's syndrome and HH are beyond the level of clinical competency of any liaison psychiatrist.
It is also a fact that patients diagnosed with "CFS/ME" are not screen for all manner of pituitary disorders or rare forms of auto-immune diseases that may now visibly display themselves either by examination or from routine blood tests.
If there is one thing I have learned from the last 20 years of my life it is that there is a vast amount of clinical ignorance surrounding "CFS/ME" and in particular - the repeated claims that patients are in fear of exercise and CBT that form the only viable path to making a functional recovery.
Had I not had the luck to find a rheumatologist who had recognised that there were legitimate "invisible" causes for "chronic fatigue" I would not have had those hormone level tests to examine ALL of my hormone levels.
NICE Guideline CG53 still does not stipulate that all forms of pituitary disorder should be screen for before a diagnosis of "CFS/ME" is given.
So the question is this.....
Just how many thousands of people are there out there being told that they have "CFS/ME" when they are in fact living with a clinical misdiagnosis because they were given their misdiagnosis by a doctor for which diagnosing pituitary disorders and other rare pathology were beyond their areas of clinical competence?
Competing interests:
No competing interests
20 January 2015
Stephen Edward Ralph
Retired Diagnostic Radiographer
Former ME patient and founder of www.meactionuk.org.uk
Rapid Response:
Until February 2013 I was oblivious to the fact that for my whole life I had been living with an undiagnosed pituitary disorder called Hypogonadotropic Hypogonadism (HH).
Having now gone through the entirety of my medical records it is clear to see that from the age of 20 years, I had been reporting periods of unexplained chronic fatigue.
I used to be a keen touring cyclist until my health collapsed completely in 1996 following a severe viral infection. I had previously reported that I was not recovering from long cycle rides with my club.
I was diagnosed with ME/CFS in 1997 and following that diagnosis, my entire medical history became effectively null and void.
I was forced to retired from my career as a diagnostic radiographer.
All my symptoms were simply deemed to be caused by "CFS/ME" and there seemed no way out.
By 2008 I had endured being housebound, bedbound due to severe fatigue, musculo-skeletal pain and migraines along with a G.I disorder and I had seen nearly a dozen specialists but one doctor noted that I had a history of occasional mouth ulcers and knee inflammation at night and I was diagnosed as having Behçet's disease.
In September 2013 my rheumatologist told me that he thought it worth checking all my hormone levels because he recognised that "chronic fatigue" could be caused by abnormal hormone levels.
When those tests came back it was found that I had abnormally low levels of testosterone and I was referred to an endocrinologist.
In February 2014 I was told I had been living with a pituitary disorder from birth.
In June 2014 I was told that I had been suffering from osteoporosis - probably for my entire life.
My medical records reveal that II have suffered numerous bony fractures including a crush fracture of my T8 vertebra back in 1977.
However, it now remains clear that numerous GP's and specialists alike have never read my medical records because if they had, they would have seen the evidence to at least check to see the status of osteoporosis that had been discovered when I was 15 years old.
The simple fact is - both Behçet's syndrome and HH are beyond the level of clinical competency of any liaison psychiatrist.
It is also a fact that patients diagnosed with "CFS/ME" are not screen for all manner of pituitary disorders or rare forms of auto-immune diseases that may now visibly display themselves either by examination or from routine blood tests.
And I am not alone.
http://dailym.ai/1oViUDY
If there is one thing I have learned from the last 20 years of my life it is that there is a vast amount of clinical ignorance surrounding "CFS/ME" and in particular - the repeated claims that patients are in fear of exercise and CBT that form the only viable path to making a functional recovery.
Had I not had the luck to find a rheumatologist who had recognised that there were legitimate "invisible" causes for "chronic fatigue" I would not have had those hormone level tests to examine ALL of my hormone levels.
NICE Guideline CG53 still does not stipulate that all forms of pituitary disorder should be screen for before a diagnosis of "CFS/ME" is given.
So the question is this.....
Just how many thousands of people are there out there being told that they have "CFS/ME" when they are in fact living with a clinical misdiagnosis because they were given their misdiagnosis by a doctor for which diagnosing pituitary disorders and other rare pathology were beyond their areas of clinical competence?
Competing interests: No competing interests