Many thanks for that link Brunneria. Perhaps it could be given more prominence on the site? My own experience has served to show that awareness of hereditary haemochromatosis is limited, even in practice. The reasons are perhaps understandable given that the initial symptoms of HH mimic a range of other illnesses -
elevated liver enzymes, for example, are invariably misattributed to alcohol consumption.Even in secondary care there is a high threshold of suspicion in regard to the disease.
I can see where Urbanracer is coming from but the logic is flawed to the extent that it assumes both parents are aware they carry the defective gene.The reality is that carriers will not develop symptoms by and large and have no knowledge that transmission of the gene from both will result in HH and its associated risks in any offspring.
My only concern here is to raise awareness because given the prevalence of the condition and the numbers signed up to DCUK, it seems a statistical certainty that the diabetes of a small minority will have been caused by HH and, if undiagnosed and untreated, damage to other organs will follow or be present already.
We are in an interesting state of flux in my family, since a family member has recently been flagged as having high ferritin (which is a warning sign of haemochromatosis). He has a diagnosis of T2 and has had very slow developing glucose dys-regulation for the past 20 years.
Unfortunately, it now turnes out that he has had raised ferritin for several years, but not flagged by his doc.
His levels are significantly above the normal range, but not up into the kind of level which would have triggered investigation.
When asked about it, some tests were done, but just ‘for monitoring’ and no genetic testing has been done, despite it being requested by the family.
I have always been curious about the ‘T2’ history on one side of our family. It goes back 4 generations and 7 people. All slim. All developing ‘T2’ in their 50s, 60s or 70s. Up until now, I had assumed it was just that our family wears out its capacity to cope with carbs. But now? I have begun to wonder about a genetic predisposition to haemochromatosis.
From the reading I have done on the subject, it looks like there are several different genes in play, some have a severe effect, some mild, and they can stack together. I am assuming that
if haemochromatosis is present in my family, then it is a mild form.
My own ferritin levels are slightly above the normal range, and have climbed steadily, every test, for the last few years. I am currently 51, and entering menopause, which is when ferritin levels rise for a lot of women, but they still should not be rising out of the ‘normal’ post menopausal level. Of course, I already have severe glucose dysregulation, but I don’t want additional organ damage from haemochromatosis in addition, do I? So am keeping a watching brief.
Definitely something to keep an eye on!