Anyone have an enlarged spleen when you were diagnosed with Haemochromatosis?
Posted , 1 user is following.
My iron/ferritin is 2017 and I have an enlarged spleen (20 cm vs the average of 11cm). I have read that blood cancers (leukemia/lymphoma) can accompany this combination as well as cancer that has spread. I am waiting for the results of an HFE Genetic test for haemochromatosis. I have read that haemochromatosis can cause an enlarged spleen but I have not seen anyone with haemochromatosis mention it. So if any of you had/have an enlarged spleen, it would be nice to hear. :-)
1 like, 5 replies
sheryl37154 handsomep
Posted
Google "enlarged spleen and hemochromatosis" you will find a connection.
handsomep sheryl37154
Posted
One source said classic hemachromatosis does NOT cause an enlarged spleen, that only Type 4 (Ferroportin Disease) does. Another source said that classic hemachromatosis CAN cause an enlarged spleen. Some conflicting info. And while it's encouraging to hear that it's possible, I haven't read a single post where someone mentioned actually having an enlarged spleen which I thought was strange.
sheryl37154 handsomep
Posted
The very first write up I looked at mentioned enlarged spleen and I have seen it many times. I thought someone mentioned having it on this forum 'long ago', so let's see if someone comes forward.
Another type of confirmation or otherwise, is checking researchers' papers.
handsomep sheryl37154
Posted
I wonder also if it's common practice to check for an enlarged spleen if you are diagnosed with Haemochromatosis? Was that the case for you Sheryl, did you have an ultrasound to check your spleen?
sheryl37154 handsomep
Posted
No, I did not when I was diagnosed, maybe someone had a poke around and obviously I did not have a problem there. In recent years I have had a full abdomen scan checking on possible cancer movement and my liver, spleen, kidneys are all deemed 'perfect'. My iron deposits were causing problems elsewhere, e.g. heart, bones, skin, brain, cancer tumours, pituitary gland, and hypothalamus problems that I can 'remember'!
My diagnosis was back in 1998, 9 years after onset and very little known about it - a lot less than now, although it does not seem so when you talk to some drs who are still in the dark. When I was suffering with symptoms and undiagnosed, there was no google to help.