Invest in ME - An ME Sufferer'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 could correct this by putting them back in. However, when he wrote to my GP he mentioned that my symptoms had been 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, but 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 to 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.

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 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 second opinion, when your GP writes, "she thinks she has a glandular problem, but has been investigated and has been told she hasn't". This consultation alone ended up costing £800. We have spent thousands; we stopped counting at fifteen thousand pounds.

In Autumn 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.

Professor Hooper 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 also 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 getting 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 that pituitary disease is ignored.

Yet NICE Technology Appraisal 64 issued in 2003 stated to prescribe 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 misdiagnosed illness in this country.

I continue to pursue this travesty of justice; my NHS formal complaint was forwarded to the Parliamentary and Health Service Ombudsman in April 2009. The Ombudsman normally takes six weeks to decided whether to conduct a formal investigation into a complaint. It is now midway through August 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.

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 chronic fatigue is "all in the mind" and patients are just put in the dustbin without appropriate testing. This is something that should be referred to the European Court of Human Rights.

I have said to my endocrinologist that the effects of RA are nothing compared to the horrendous effect of pituitary disease; my personal experience makes me a good judge on this point.

Prior to 2005, I was having a reasonable life, but since then my husband and my lives have been devastated because of the treatment I have received. Without the care and support provided by my husband I would not have been able to survive.

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 other people in high places, and they don't want to know.

The dispute over the use of the short synacthen test is long standing. In January 2004 Dr Adam P. Morton of Mater Hospital, Brisbane, Australia 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.

There are approx. 250k people diagnosed with CFS, I wonder how many of those have got pituitary disease.

If the NHS doesn't care about all of the people out there I do. I will go on campaigning because my conscience will not let me do anything else.

Since Christine’s story was posted online, she has lobbied 1400 members of the House of Commons & the House of Lords, so there is not one MP or Peer who doesn’t know what is going on in the country.

She has also written to all 10 Strategic Health Authorities in England & has had: -

3 very good responses, 2 mediocre & 2 are still investigating & 3 have not yet replied at all.

1/	As you rightly identify, NICE guidelines require that patients have an I.S.T. test for growth hormone deficiency and should receive hormone treatment for other pituitary hormone deficiencies. Thank you very much for reminding us of the importance of proper diagnosis for patients with this condition.
2/	You are right to point out that the largest number of patients referred to Endocrinology will have Diabetes. This could prevent the needs of patients with Pituitary disease being met. It is therefore important that some members of the Endocrinology team specialise in pituitary disease. I know this is happening in this area.
3/	Short synacthen tests are commonly performed in this region, but as you correctly suggest this is just to rule out disease such as Addison’s of the adrenal gland and does not give any information about the pituitary gland.
4/	You raise two important issues, the first relates to the possibility of Pituitary disease in patients who have symptoms associated with CFS, the second relates to the diagnostic tests for Pituitary disease particularly the role of dynamic function testing.

If you are not happy with the way you have been treated, write to your S.H.A. & tell them about it, it’s the only way they will find out. They are public servants, funded by the taxpayer, so they are obliged to reply to your letter.

If you have had severe fatigue for more than 6 months with other undiagnosed symptoms, not necessarily the same as mine, as people are all different – we don’t come in jam jars, do we! See your GP. Tell them you would like to be referred to an Endocrinologist, take my story with you & let them read it. Let the Endocrinologist read it! Tell them you want the Gold Standard Dynamic testing. It is your right to receive the best diagnostic test.

I put my heart & soul into my story. I wrote it to help you. I think of you all each & every day now & forever.