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"Mis-Diagnosing Chronic Fatigue Syndrome/Addisons Disease"

About: Alexandra Hospital Milton Keynes Hospital / General medicine Milton Keynes Hospital / Gynaecology Milton Keynes Hospital / Rheumatology Milton Keynes PCT

(as the patient),

I am aged 52, and would you believe it took my various G.P's 30 years to diagnose my condition? and only then this came about because another member of my family, who had identical symptoms, was diagnosed with Addison's Disease, which forced my G.P into allowing me to have the apporpriate tests carried out.

For years I had complained of extreme fatigue which had just about destroyed my life, including my marriage. I was barely able to work, or go about my daily tasks. I also had a range of other symptoms, including severe joint pain, constant colds, very painful - irregular - excessively heavy periods, sickness and dairrhea. Like many people who suffer chronic fatigue symptoms, I was labelled lazy, depressed, and a heartsink case. My various G.P's would raise their eyebrows everytime I presented myself into their consulting rooms. Their only comments would be "you are very stressed and should be taking something along the lines of Prozac". However I would never accept any such medication. Eventually I gave up and stopped visiting the G.P surgeries as there seemed to be no point. All I kept hearing was "your blood tests show no abnormalities and there is no physical reason for your condition".

A member of the rhuemetology team at Milton Keynes hospital never dismissed what I was saying and said that he believed I had "fybromyalgia", which again, is another one of these cop out labels like M.E and "chronic fatigue syndrome" which means that yes, they do believe there is something going on, but no they haven't a clue what might be causing it. In fact this particular doctor was the only one who ever went as far as testing my thyroid levels, but because I was just (and I mean just) still within the reference range, he dismissed the possibility that there may have been an endocrine problem.

Eventually I went into my first Addisonian crisis, and was taken into MIlton Keynes general hospital as an emergency case. Lots of tests, including E.C.G but everything was within normal range...... again - many many "just within normal range" results. Some low normal, and some high normal. Nobody ever queried why my results were so all over the place. As my G.P put it "normal is normal is normal" therefore no need to ask any further questions.

I was very close to death. I was SO fatigued that I could barely move around, and yet I was sent home with yet another letter for my G.P who then diagnosed me as suffering from "brain fatigue".

When my brother was diagnosed with Addison's Disease, the rhuemetologist at Milton Keynes hospital who had never dismissed the probability that I had a serious problem said "my goodness, that really makes a great deal of sense, you must have an ACTH stimulation test as soon as possible, as it is very likely that you too have Addison's Disease".

My G.P had other ideas. There was NO WAY he was going to allow me to have this test. He said he had tested my morning cortisol levels and they were within normal range (again JUST). I told him the morning cortisol tests were not enough and are certainly not the gold standard for testing. Again he refused my request to refer me for an ACTH stimulation test - that was until I told him in no uncertain terms, that if I died as a result of Addison's Disease, then my family would be waiting for him with a lawyer and would sue the arse off him.

Well, the G.P squirmed in his chair when I told him this, and he relented. I was eventually sent to the endocrinologist at Milton Keynes hospital, the test appropriate test taken, and after about 10 days I received a letter asking me to make an appointment at my earliest convenience as it was very likely that I had Addison's Disease.

My G.P's were terrified, and rightly so.

How many other people who suffer chronic fatigue symptom have endocrine disorders and auto-immune conditions but because their parameters fall JUST within the normal ranges are deemed to be feining illness or at worst manic depressives? How many other people are having their lives ruined because no practioner queries why their patients blood test results vary wildly from one end of the scale to the other? Why is there this prevelance of the "normal is normal is normal" mentality prevading the medical profession?

Fortunately I am alive and still in one piece to relate my story. I know of others who have died, and others who have suffered strokes. There really needs to be a major review of how chronic fatigue patients are tested and treated.

I now see Dr. R. Davis at the Alexandra Hospital in Cheadle, Cheshire. He is the endocrinologist who treats my brothers (yes, there is another member of my family who has now been diagnosed with the same condition). Dr. Davis and his team are trying to get across to G.P's what to look for in patients with chronic fatigue symptoms.

Addison's is a life threatening disease. They say the disease is as rare as hens teeth. Maybe it isnt as rare as some are lead to believe. Maybe it is overlooked far more than it should be. Not only Addison's but the whole array of auto-immune diseases which can wreck people's lives.

Come on health professionals, get your act together. Start attending the endocrine conferences which are held at least once a year in the U.K, You may learn that those of us who are chronically fatigued are indeed suffering from life threatening illnesses.

Just stop and think next time someone walks in through your door complaining that they are not just sleeping a great deal, but are actually feeling as though they are slipping towards death, they may just be telling you something very important ....... they are actually very seriously ill and because of your padlocked mind constantly looking for Mr or Mrs Normal Range, you are missing the individual Mr or Mrs sitting in front of you, who doesn't fit neatly into your little box.

Please - wake yourselves up.

With great thanks to the likes of Dr. R. Davis for helping me and other members of my family.

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