overload

[pduggan9011]

Has anyone been diagnosed with hemochromatosis-- iron overload and been has had a liver transplant or liver issues?

[AyrshireK]

We've had a few members on here in the past who have had both haemochromatosis and transplant. None of them have posted recently but you might be able to find old posts by searching BLT forum on here.

British Liver Trust has a page all about the condition at:- britishlivertrust.org.uk/in...

All the best, Katie

[pduggan9011 in reply to AyrshireK]

Thanks!

[pduggan9011 in reply to AyrshireK]

I had a transplant also 6mos.ago .thanks!

[Kempster]

Hi, I've got chirrhosis as a result of undiagnosed haemochromatosis. It's currently compensated (I have no symptoms, all bloods are fine) and was only found as result of a CT scan for a kidney problem, now resolved. I was diagnosed and treated for rheumatoid arthritis for a few years before this was shown to be joint damage caused by the haemoC & I've had hip and knee replacements). Just turned 70 so too old for a transplant, but then it appears my liver is working pretty well, considering.

[Hdon in reply to Kempster]

I have Genetic Haemochromatosis (GH) - so important for people with unexplained liver issues to get checked for this. My liver was inflamed with some fibrosis, went back to normal size after de-ironing and I’m still here 30 years later. A good friend had a transplant because of GH - very successful.

[bluteco in reply to Hdon]

How can I de-iron. My blood work shows iron overload, and I just got my 23 and me DNA test that shows I do have the marker for it. My dr doesn’t want to see me for 6 more weeks and I’m afraid there is damage being done to my liver. What can I do in the meantime to help my liver?

[Hidden in reply to bluteco]

Good afternoon.

If you have a defiinite diagnosis of haemochromatosis then you need to be referred to a liver specialist so that the condition can be managed appropriately.

Here is a link to our information, you can check whether you have had all the right blood tests to make the diagnosis.

britishlivertrust.org.uk/in...

regards

[Hdon in reply to bluteco]

Hi - Check out the Haemochromatosis UK website haemochromatosis.org.uk/ there you will find lots of information on being newly diagnosed and treatment during the COVID-19 situation. There is also a helpline button, if you click on that you will find a helpline number to call five days per week from 12-00 to 15-00, someone will either answer or get back to you asap. There is also an email helpline if you feel more comfortable putting things in writing.

[X19Dave]

Hi my wife was never diagnosed with hemochromatosis but I am sure she had it set metal detectors off had the womens problems you get with it and a few other things that tie in and yes she had to have a liver transplant from what I could find out hemochromatosis does the same damage to the liver as heavy alcohol liver cerosis or how ever it is spelt