1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Phoenix Rising Adds Two New Board Members
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
Discuss the article on the Forums.

Haemochromatosis - have you got this in your family?

Discussion in 'General Symptoms' started by Allyson, Jun 15, 2013.

  1. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    669
    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 likes this.
  2. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    245
  3. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    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.
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    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.
  5. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,445
    Likes:
    1,946
    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.
  6. LaurieL

    LaurieL Senior Member

    Messages:
    447
    Likes:
    240
    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.
  7. alex3619

    alex3619 Senior Member

    Messages:
    7,185
    Likes:
    11,254
    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.
  8. John Mac

    John Mac

    Messages:
    28
    Likes:
    48
    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.
  9. lejones1

    lejones1

    Messages:
    19
    Likes:
    5
    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.
  10. Art Vandelay

    Art Vandelay

    Messages:
    46
    Likes:
    69
    Adelaide, 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.
  11. alex3619

    alex3619 Senior Member

    Messages:
    7,185
    Likes:
    11,254
    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.
    merylg and Valentijn like this.
  12. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    245
    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
    merylg likes this.
  13. Sea

    Sea Senior Member

    Messages:
    720
    Likes:
    831
    NSW Australia
    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.

See more popular forum discussions.

Share This Page