Deborah
"After I was diagnosed, my GP told me her husband had haemochromatosis. I’d been back and back to her; how did she not know?"

Deborah had abnormal liver markers in her blood tests, multiple surgeries, and saw many different consultants. Her symptoms were dismissed as stress, and ageing. Deborah reflects on her experience getting diagnosed, angered by the lack of concern by her clinicians, particularly as her GP had prior knowledge of the condition but failed to pursue a diagnosis sooner.

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What next?

It was good to get the genetic test done and a diagnosis confirmed. I’d been feeling unwell for quite some time.

Having the diagnosis lead to the start of treatment and management of my condition.

Without it I am not sure where I would be today.

I’d had liver markers that were off in my blood, but the GP hadn’t taken any notice of those.

I asked the GP to test my iron levels and that's when my iron came back 90% saturated and ferritin in the thousands.

I’m frustrated looking back; the hip pain, knee pain. I’ve been with consultants looking at my high blood pressure, orthopedic consultants, I’ve had two angiograms for FMD in my right renal artery, tested for ulcers and told it was IBS. I’ve had hip surgery, and my full rotator cuff repaired, and they just called it accelerated wear and tear.

The angiograms required an artery puncture, so I’d lost a lot of blood. It was funny how after each of those, I felt a little bit better; it helped my iron levels.  

I felt totally dismissed because I’m a woman of a certain age and I work in what people consider to be a high stress environment.  

I’ve had CBT because I was going through so many surgeries, being diagnosed with haemochromatosis, high blood pressure, FMD, all within five or six months.

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