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Haemochromatosis - have you got this in your family?

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Haemochromatosis

CDC was investigaing links between ME and Haemochromatosis

It is hereditary and often does not manifest til 40s and 50 s

Many thanks for any replies.

Ally
 

Enid

Senior Member
Messages
3,309
Location
UK
Interesting thanks Allyson - I went through an awful period of seemingly metals overload when everything tasted "metallic" too. I know something genetic involved as my brother went down with ME even worse than I and a cousin now has the related Fibromyalgia.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
My first cousin has this. It is apparently common among people of Irish descent like me. I got tested and according to the test at least I was negative.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
There was a documentary on UK TV about 10 years ago and more people were tested then. Not seen many who found this a problem in the end.
 

LaurieL

Senior Member
Messages
447
Location
Midwest
My son is a carrier, I am not. I did go through a period prior to becoming ill, of my skin bronzing, and dark brown/grey-charcoal-like patches on my arms. I do not carry the mutation but I certainly went through something like it.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I have one haemochromatosis gene, which technically makes me a carrier. However at age 52 I am about to cross the Australian threshold for commencing treatment. This is of concern since if I have low blood volume then losing more blood for treatment could precipitate a major and prolonged crash.

I have other relatives who have the gene, and a relative with full haemochromatosis. Two of my great grandparents were Irish.
 

John Mac

Senior Member
Messages
321
Location
Liverpool UK
I have high levels of iron and have been tested twice for haemochromatosis, both negative. The doctors just shrugged their shoulders and said it can be an inflammation marker.
 
Messages
19
I have double genes for it, so I guess I have it, but I'm asymptomatic (I'm a 23 year old female so that would be rare anyway). I found out a year before I got sick - my iron level was out of range even though I was a young female vegetarian who didn't take iron supplements, then I found out from my dad he'd been diagnosed a while ago and used to do bloodletting but never became symptomatic.

I know hemochromatosis can cause "chronic fatigue", but I don't think a connection with CFS/ME has been found - I've looked into this a fair amount and talked to a few doctors about it. Even if there was a connection, it would have to just a be a predisposing factor - I think something like 1 in 10 people of Anglo/Irish descent carry at least one gene for it.

One interesting thing though - there is a connection between iron and infection (by bacteria and viruses). Oddly since I've been ill my iron levels have dropped to low normal, even though I started eating red meat again. I'm still in an acute viral state and one doctor said the drop in iron was potentially my body's attempt to suppress a virus since viruses need iron to replicate. I don't really know the details of this but if you google it there are a fair number of medical journal articles.
 

Art Vandelay

Senior Member
Messages
470
Location
Australia
I have high levels of iron and have been tested twice for haemochromatosis, both negative. The doctors just shrugged their shoulders and said it can be an inflammation marker.

Same here. My ferritin levels were the highest the doctor had ever seen in my first test. However the doctors I ended up consulting about this issue lost interest after a few fruitless tests for haemochromatosis and fatty liver.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
In the late1990s (1998?) the CDC noted in the minutes of one of their meetings that at least one of the genes for haemochromatosis is associated with CFS and might be a risk factor. I don't think anybody ever followed this up. I found this in one of my many searches but it was several years ago. My guess is that is a risk factor, like EDS and methylation issues, and can cause an increase in oxidative stress. What happens when you have multiple oxidative stress disorders at the same time? I am not sure, but I don't think it would be good.
 

rlc

Senior Member
Messages
822
Hi everyone, the genetic tests commonly availble do not rule out Hemochromatosis in all cases. They normally only test for two of the genes that can cause it, and over 40 genes have been found that can cause it, see http://www.ironoverload.org/information/objections-pt1.html How to correctly test for Hemochromatosis is explained here http://www.ironoverload.org/information/diagnosis-pt1.html be aware that even though it is one of the most common genetic diseases, Most doctors no very little about it, and their information on it is often very out of date

All the best
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
Same here. My ferritin levels were the highest the doctor had ever seen in my first test. However the doctors I ended up consulting about this issue lost interest after a few fruitless tests for haemochromatosis and fatty liver.
That seems very incompetent of your doctors. As ric noted there are many genetic mutations that can cause iron overload and the genetic tests are only for the most common ones. The test can confirm but not rule out Hemochromatosis.

My latest iron studies blood test revealed a transferrin saturation of 60%, the first time ever that my iron has not been low. According to 23andme I do not carry any of the 3 most common genetic mutations.