CHRISTINE’S STORY

After suffering from severe rheumatoid arthritis (RA) for over thirty years, early in 2005 I suffered a virus
that would not clear up. Initially I had a sore throat with flu-like symptoms.
This developed into severe fatigue, vertigo, tinnitus, blurred vision, vomiting, feeling faint, palpitations,
poor circulation and hot sweats. I felt at times that I was going to die.
I then suffered a DVT, which I had to diagnose myself. I took myself to A & E and I had a clot from my
ankle to my pelvis.
Throughout 2005 I paid to see several consultants privately. I also paid for private scans.
My blood pressure was flying about all over the place, but no one could diagnose what was wrong with
me. The cardiologist because of the blood pressure problems advised me to see an endocrinologist.
In 2006 I saw an endocrinologist who spoke of a possible pituitary problem; he said if your pituitary is
spitting the wrong hormones out, we can correct this by putting them back in. However, when he wrote to
my GP he mentioned that my symptoms were associated with CFS. This amused me as RA causes
chronic fatigue anyway.
The endocrinologist arranged for me to have the short synacthen test. This test should start before 9am.
It took an hour to cannulate me and the nurse was about to start the short synacthen test at ten o’clock,
when a doctor knocked on the door and said he needed her to give assistance to a patient immediately.
She said she was just about to start a test on the lady but he insisted that she left me. The test did not
start until 10.30am.
I know now that I was given a massive dose of ACTH, a chemical produced by the pituitary to stimulate
the adrenals. Three weeks later I was told the result was normal. However, this only proved that my
adrenals were working when stimulated.
The short synacthen test should only be used if Addison’s disease is suspected. It will not pick up
secondary hypoadrenalism caused by pituitary disease. Another consultant has told me this.
Shortly after this test I had a burst vein in my bowel and was rushed into hospital for a colonoscopy.
My condition continued to deteriorate to the extent that I am surprised that I am still alive.
I had a private saliva test in January 2007, which showed my adrenals were at exhaustion stage,
pointing to a pituitary problem. The saliva test was a 24 hour test, but one of the times when I had
sufficient cortisol coincided with the same time that I had the short synacthen test.
I discussed my problems with the Independent Complaints Advocacy Service (ICAS). They helped me
prepare an NHS formal complaint. I contacted Emeritus Professor Malcolm Hooper, a professor of
medical science who gave me a report to send to the hospital with my complaint.
My formal complaint was sent to the hospital in May 2007; they would not accept the private test results
and ignored Professor Hooper‘s report. They did not offer further testing.
A very experienced osteopath examined me and said that my spinal fluid was not right and I had a
pituitary problem. I did a lot of research and gave a lot more information in a further letter to the hospital.
The reply was that the endocrinologist had done the short synacthen test instead of the more dangerous
and complicated Insulin Tolerance Test. I was told once again that I did not have an adrenal or pituitary
problem. However, my condition was still deteriorating. I became toxic, everything I ate tasted like
poison and the only thing I could tolerate was rice pudding.
In October 2007 my NHS complaint was forwarded to the Healthcare Commission to request an
Independent Review. They obtained advice from a consultant endocrinologist. He stated that if the short
synacthen test was unequivocal, no further testing was necessary. The Healthcare Commission advised
me in April 2008 that they had not upheld my complaint.
In the meantime I was getting more and more desperate; I was spending thousands of pounds to try and
get myself better on vitamins and alternative therapies. Every way I turned I hit a brick wall.
In Summer 2007 I consulted an Endocrinologist privately; but you cannot get an honest independent
second opinion, when your GP writes, “she thinks she has a glandular problem, but has been
investigated and has been told she hasn’t. The consultation with this doctor ended up costing £800. We
have spent thousands; we stopped counting at fifteen thousand pounds.
In the Autumn of 2007 I again spoke to Emeritus Professor Hooper. I told him that I felt so ill I was sure I
was going to die. I had just been left ill by the NHS without any help or medication to overcome my
problems. I told him that I had spoken to other people who were having the same problem. I could not
believe this was happening in Britain in 2007. He asked me if I could travel. I said possibly if I lay down in
the back of the car.
He gave me the name of a consultant who he was sure would do the correct test to identify and treat my
problems. I arranged to see the consultant privately, I don’t know how I managed the many 90 mile
round trips I needed to make. Every visit left me exhausted, but the angels must have been with me. I
knew I had to do this not just for myself but for everyone out there who is having a problem.
In Spring 2008 I eventually had dynamic testing (the glucagon test) and was diagnosed with
inflammation of the pituitary gland. This had caused severe deficiency of the Adult Growth Hormone and
hypocortisolaemia, which is secondary hypoadrenalism caused by a lack of ACTH from the pituitary. In
August 2008, I at last started to get the appropriate medication from the NHS.
The consultant has said that my body has been deprived of the hormones for so long it could take years
to restore full health again.
The medical profession saying that no further testing is necessary if you have had a normal result from
a short synacthen test, means pituitary disease is ignored.
NICE Technology Appraisal 64 issued in 2003 says to be prescribed the Adult Growth Hormone you
need dynamic testing. So how many people are out there with undiagnosed pituitary disease, because
the NHS is not conducting the correct tests. This is disgusting if not evil. I believe this is what is causing
a lot of illness in this country.
I will continue to pursue this travesty of justice; currently my NHS formal complaint was forwarded to the
Parliamentary and Health Service Ombudsman in April 2009. Despite being told the Ombudsman
normally takes six weeks to decide whether to conduct a formal investigation into a complaint. It is now
mid-way through August 2009 and there is still no decision.
I am left not knowing who to trust or believe and I feel as if the NHS has mentally and physically abused
me. The worst thing about it was knowing what was wrong with me, knowing what medication I needed
and having to put up the fight of my life when I was so ill to get it.
My local MP has taken an interest in my case over the last three years. He has pledged to do all he can
to help me, and I am urging him to ask questions in the House of Commons.
I am indebted to Professor Hooper, I have lobbied people in high places, and they don’t want to know.
One problem is that the bulk of the endocrinology budget is spent on diabetes. People with glandular
problems are being neglected.
Another problem is the psychiatric lobby saying that CFS is “all in the mind” and patients are just being
put in the dustbin. This is something that should be referred to the European Court of Human Rights.
I have said to my endocrinologist, that RA is nothing compared to the horrendous effect of pituitary
disease; my personal experience means I am a good judge on this point.
Prior to 2005, I was having a reasonable life, but since then my husband and I have been devastated
because of the treatment I have received. Without the care and support provided by my husband, I
would have been unable to survive.
There are approx 250 thousand people diagnosed with CFS. It could be like me many of them have got
undiagnosed pituitary disease, because they are not given dynamic testing.
The dispute over the use of the short synacthen test is long standing. In January 2004 Ahmaad Wise of
York wrote in the British Medical Journal, that when the short synacthen test was used where there was
a suspected pituitary problem lessons had not been learned. My case proves the point; the test is only
suitable for detecting Addison’s disease, which is complete failure of the adrenal glands.
If the NHS doesn’t care about all of the ill people out there, I do. I will go on campaigning because my
conscience will not let me do anything else.
August 2009
FOOTNOTE:
Professor Malcolm Hooper of Sunderland University has spent decades looking at autism, CFS/ ME
and is Chairman of the Gulf War Vets Association, many of which are suffering from inflammation of the
pituitary gland.
He has a wonderful disposition and is there for everyone. The Pituitary Foundation could do no better
than to have Professor Hooper on their team; you can reach him email address.
You have my permission to publish my story on your own or any other publication and to place on any
website you feel appropriate.
Sadly Christine died in July 2011; it is still hoped that the difficulties testing for pituitary disease will be
overcome. This will fulfil our wishes to ensure patients are not left to suffer; without medical help when
given a diagnosis of ME/CFS due to the failure of endocrine testing.

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