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Genetic Haemochromatosis

2 replies

MumHadEnough · 25/06/2009 14:41

Anyone have this? My mum has just been diagnosed.

We've both been having some blood tests done as we were investing whether or not we have a b12 deficiency (my sister has) and as a result she has been diagnosed with GH.

Now its pretty much a cert that I have it too since my doc is already querying why I have raised serum ferritin levels (I'm 33), they weren't too bad but raised enough for her to be concerned. I've to have my bloods done again in a fortnight. I was also showing raised ESR's and was concerned about rheumatoid arthritis as I get pains in my fingers. (Now know this is another symptom of GH).

My mum has to advise her brothers and sisters to go for a blood test. With hindsight, its obviously been running through our family for years. My grandmother died of liver cancer and my grandfather, her husband was having blood removed just before he died because he had "too much iron". So it looks like both of them may have had GH.

Additionally my great grandfather died from liver cancer too.

Just after anyone's experiences. I'm hoping that mine may have been "caught" just in time before it does any longterm damage. Not so sure if its too late for my mum though.

OP posts:
MumHadEnough · 25/06/2009 22:38

Nobody then? lol

OP posts:
HellsBells71 · 19/11/2009 15:12

Hiya MumHadEnough,
OMG i can't believe i haven't spotted your post before now! I registered in early August having fallen pregnant basically after first attempt. Unfortunately i had a miscarriage at 7 weeks and since then I've posted one message to see if anyone else who's, or has been, trying to conceive and is a GH sufferer. Your message never showed in my search results until today- I'll get on with it: I am a GH sufferer. I found out 3 years ago now, through medical info passed on from my biological mother (I'm adopted)that I should be tested as the genes were in my biological family. Had the tests and was confirmed as having both recessive genes; so am a sufferer. I was referred to the wonderful Prof Williams at UCLH who has been monitoring my ferritin levels ever since. I had a liver biopsy done in June this year which confirmed high iron overload there but, touch wood, no cirrhosis so far. He has referred me to the haematology dept in UCLH who began venesections with me briefly in July but then stopped when i fell pregnant after 2! My doc's opinion is that if we're ttc then i should concentrate on that rather than trying to fit in blood removals too. How did your diagnosis go? My ferretin is over 400 and my main symptoms have been exhaustion, emotional swings and to a certain extent the aches. My libido also suffers, which is great when ttc!! Anyway, i was totally freaked out when i first discovered my GH but it's fab that you know so early. I'm 38 now but the main thing is to get yourself referred to a liver consultant who can monitor and look after you; hopefully you'll never then become 'ill'. Knowledge really is everything in this case! let me know how you got on [smile)

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