Advertisement
If you have a new account but are having problems posting or verifying your account, please email us on hello@boards.ie for help. Thanks :)
Hello all! Please ensure that you are posting a new thread or question in the appropriate forum. The Feedback forum is overwhelmed with questions that are having to be moved elsewhere. If you need help to verify your account contact hello@boards.ie

Lurking pandemic - Hemochromatosis.

Options
2456

Comments

  • Options
    #32
    littlebug
    Closed Accounts Posts: 4,832 ✭✭✭littlebug


    galah wrote:
    hey all,
    I suspect I have hemochromatosis (got my blood test results, but no explanation from the doc yet, but v high iron levels, and transferrin saturation) - how did you find out about this disease? Did the doctor actually indicate it, or did you have to do your own research and point it out? What other symptoms did you have? Could there be any other explanation for high iron/saturation levels, other than this disease?

    To be honest, I am sh..scared, and I also realise that this is not a medical advice board, but any info would be appreciated!

    I do not have any faith in the Irish "health" system, so this makes it even worse...


    Hi Galah, did your doc tell you exactly what your results were? I was recently tested and my transferrin saturation was 47% and my haemoglobin was 15.6 (can't remember the others) which, though still within the normal range, my doc thought was high for a woman my age and considering I have a lot of joint pain. all other tests were normal. He's repeating the tests in3 months. I've read that a TS over 50% warrants further investigation.

    P


  • Options
    #33
    Darwin
    Registered Users Posts: 2,659 ✭✭✭Darwin


    I think I may be a good candidate for Hemochromatosis as well. My transferrin saturation was recorded at 67% and I suffer a lot from heart palpitations. I've been advised to get my GP to check my Ferretin levels. The thoughts of no more Guinness :eek:


  • Options
    #34
    huggs2
    Registered Users Posts: 471 ✭✭huggs2


    I am a 59 year old male diagnosed last year. Serum feritin 2580 and saturation of 98%.If you are in any doubt about your symptoms please see your doctor.
    I now have heart problems and cirrosis of the liver, pains in my hands and joints.etc.A genetic test confirmed i have the mutant gene c282y the most serious type. Dont leave it too late.

    This video explains the condition for anyone interested.
    http://www.cdnhemochromatosis.ca/youtube.php
    This link for further info.
    http://www.mayoclinic.com/health/hemochromatosis/DS00455


  • Options
    #35
    cautioner
    Closed Accounts Posts: 862 ✭✭✭cautioner


    My father was diagnosed 4 or 5 years ago, and it sort of went over my head at the time, but this-
    The Dr00g wrote:
    Victims who are not properly diagnosed and treated often die around the age of 50.
    certainly shocked me. Dad turned 50 last year. I've since become interested in Biology and even did a project on the condition for class, but strangely enough I never came across an average age of death. Scary. Looks like we might have been just in time.


  • Options
    #36
    atlas1
    Closed Accounts Posts: 2 ✭atlas1


    Interesting - I found myself at the forum here having heard someone talk about this on the radio. I've been having stitching pains since january, had various scans of kidneys etc. but all clear. Then I hear that a stitch from running is somehow connected to the liver (can't remember exact details). Going to have some skipped heartbeats/dizziness checked out shortly and was beginning to feel like a hypochondriac!

    After reading these posts, I should maybe take this bloodtest too? Thing is my parents are over 70 and there was never any problems with this and as a kid I wasn't 'bronze' (more Irish blue/white). However, I've always had creaky/cracking joints (no pain though). Any thoughts from someone with a better understanding of this?


  • Advertisement
  • Options
    #37
    DrIndy
    Registered Users Posts: 3,461 ✭✭✭DrIndy


    going to your doctor to be checked out is a couple of very simple blood tests - if you are worried it is easy to outrule.


  • Options
    #38
    huggs2
    Registered Users Posts: 471 ✭✭huggs2


    Sounds like you need to have the blood test.I had a grey complection when i was diagnosed, but some people have the bronze look.,this only happens in later life when the skin becomes overloaded with iron.You should also see a cardiologist about skipped beats/dizziness.I had those symstums and it turned out i had three electrical problems with my heart most of it caused by excess iron in my heart.Your parents may have been carriers and carriers do not have any symtums.I am a 59 year old male with HHC.


  • Options
    #39
    atlas1
    Closed Accounts Posts: 2 ✭atlas1


    Thanks to both of you for the advice :), yes, I'll go ahead and get that test done, will be getting cholesterol test/ecg this week anyway.

    Hope it's working out ok for you huggs2


  • Options
    #40
    DrIndy
    Registered Users Posts: 3,461 ✭✭✭DrIndy


    the good news for haemachromatosis is that the blood bank in ireland after a DECADE of campaigning has finally woken up.

    People with haemachromatosis need to have up 100 units of blood taken off to reduce the iron load (sometimes even more!) over 1-2 years and then maintenance treatment. They used to throw the blood in the bin because the transfusion board would only accept voluntary donations.

    Thankfully now they are starting to accept this blood which is perfectly normal and usable to treat people with.

    So your illness and your difficulties now can be used to save tens, even hundreds of patients which is a wonderful contre-coup.


  • Options
    #41
    huber
    Registered Users Posts: 54 ✭✭huber


    Hi
    I have been reading everyones experiences and thoughts on hemochromatosis but I still have a few more questions that someone might be able to help me with. My mom was diagnosed about two years ago and gets blood taken off every two to three months although she has to remember and I have to keep annoying her to go as the doctor doesn't give her any exact time to come back. Im wondering is there any further test she should be sent for as she is in her 60s and may have had this for a while. She complains a lot with joint pains. Her doctor has not sent to her to a specialist or anything and I'm wondering is this normal or should she be referred for extra testing?


  • Advertisement
  • Options
    #42
    huggs2
    Registered Users Posts: 471 ✭✭huggs2


    huber wrote: »
    Hi
    I have been reading everyones experiences and thoughts on hemochromatosis but I still have a few more questions that someone might be able to help me with. My mom was diagnosed about two years ago and gets blood taken off every two to three months although she has to remember and I have to keep annoying her to go as the doctor doesn't give her any exact time to come back. Im wondering is there any further test she should be sent for as she is in her 60s and may have had this for a while. She complains a lot with joint pains. Her doctor has not sent to her to a specialist or anything and I'm wondering is this normal or should she be referred for extra testing?

    I am a 59 year old male and discovered it in feb, 07 and unfortunately joint pain is one of the more common complaints. I have pain in my hands and my knees.Your mom should write down all her questions for the next time she sees her doctor. In the mean time you could look here for info.

    http://www.mayoclinic.com/health/hemochromatosis/DS00455


  • Options
    #43
    littlebug
    Closed Accounts Posts: 4,832 ✭✭✭littlebug


    Glad to see this thread up again. i was told to be retested in 2 years so seeing as it's 2 1/2 years now I should organise that. :)


  • Options
    #44
    Dfens
    Closed Accounts Posts: 240 ✭✭Dfens


    Yes, very common condition in Ireland but thankfully often quite easily treatable.

    Background information paper for those inclined
    http://www.scripps.edu/bcmd/pdfarea/issue_20_98/ryan.pdf


    The Irish Haemochromatosis Association is a support group for
    haemochromatosis patients and their families.
    http://www.haemochromatosis-ir.com/


    Event - Information Meeting

    The following information meetings are being held throughout the country in November and December, 2008. Hopefully, you will find a venue which is convenient for you to attend. (Non-members are also very welcome, e.g. family members, G.P.s. or anyone with an interest in Haemochromatosis.)

    KERRY:
    Cypress Suite, Fels Point Hotel, Tralee, Co. Kerry, at 7.45 p.m. on Monday, 24th November 2008.
    SPEAKER: Dr. Jane English, Consultant Physician, Bon Secours Hospital, Tralee, Co. Kerry.

    DUBLIN:
    Fintan Gunne Lecture Theatre,
    Catherine Mcauley Education Centre,
    Nelson Street (off Eccles Street) D7
    at 8p.m. on Thursday, 4th December 2008.
    SPEAKER: Prof. John Crowe and the Mater Haemochromatosis Team

    A D M I S S I O N F R E E - A L L W E L C O M E


  • Options
    #45
    huber
    Registered Users Posts: 54 ✭✭huber


    Thank you for the information and especially the date and venue of those talks. Hopefully I will get my mom to go them or I will definitely go. The Mayo clinic site was very useful as well, it had the best explanation out of all the different information


  • Options
    #46
    huber
    Registered Users Posts: 54 ✭✭huber


    Thank you for all the information especially the info on the talks with the venue and dates, hopefully I will be able to get my mom to go to one. Also the Mayo clinic site was very informative(the best and clearest information I have read out of everything).


  • Options
    #47
    Micky 32
    Registered Users Posts: 6,556 ✭✭✭Micky 32


    We recently found out that our family on my fathers side were carriers. For someone to have the illness do both parents have to be carriers?


  • Options
    #48
    huggs2
    Registered Users Posts: 471 ✭✭huggs2


    Yes. You get a gene from your mother and father


  • Options
    #49
    DrIndy
    Registered Users Posts: 3,461 ✭✭✭DrIndy


    very rarely, there can be a spontaneous mutation.


  • Options
    #50
    Mucco
    Registered Users Posts: 714 ✭✭✭Mucco


    I remember reading an article on haemochromatosis a couple of years back (economist I think). It was speculating on the prevalance of the condition in the African American population. The theory went that conditions on the slave ships were so bad, that only the strong survived, and that haemochromatosis gave these people some sort of edge.
    I'm not quite sure why it's also prevalent in north-western europe, wikipedia suggests that in times of low iron diets, there may have been a similar advantage.

    M


  • Options
    #51
    cnarf
    Registered Users Posts: 10 ✭cnarf


    I was talking recently to a man who had been diagnosed with Haemochromatosis. Afew of his brothers had died from related heart symptoms but the link had notbeen made until much later. What had protected him was the fact that he was coeliac which he happened to be unaware of and this had kept his iron levels at bay. So there may be a co-relation between the high incidence of both conditions in Ireland.


  • Advertisement
  • Options
    #52
    cnarf
    Registered Users Posts: 10 ✭cnarf


    Micky 32 wrote: »
    We recently found out that our family on my fathers side were carriers. For someone to have the illness do both parents have to be carriers?
    Carriers cn have some milder symptoms. My husband was identified as a carrier some years ago. Recently blood tests showed raised ferritin levels. he is in his late 50s


  • Options
    #53
    Goldenquick
    Registered Users Posts: 228 ✭✭Goldenquick


    DrIndy wrote: »
    the good news for haemachromatosis is that the blood bank in ireland after a DECADE of campaigning has finally woken up.

    People with haemachromatosis need to have up 100 units of blood taken off to reduce the iron load (sometimes even more!) over 1-2 years and then maintenance treatment. They used to throw the blood in the bin because the transfusion board would only accept voluntary donations.

    Thankfully now they are starting to accept this blood which is perfectly normal and usable to treat people with.

    So your illness and your difficulties now can be used to save tens, even hundreds of patients which is a wonderful contre-coup.

    Do you know if the blood is being used for transfusions now, my husband has recently been diagnosed with this condition but as far as I know they are getting rid of the blood taken off him.


  • Options
    #54
    joestingle
    Closed Accounts Posts: 7 ✭joestingle


    The list actually goes on. There was a time when victims of this condition were often labeled "hypochondriac", and not long after such diagnosis they would die due to failure of one of the major organs.

    This condition is a hereditary genetic mutation, and it is most common in peoples of northern European descent, but in particular those with Irish roots.


  • Options
    #55
    crazy dude
    Registered Users Posts: 29 ✭crazy dude


    The Dr00g wrote: »
    I read a theory that the mutated gene/s could have been caused by a dangerously low iron diet in some of the northern European peoples that the Irish predominantly descend from.

    I think in the irish climate many bacterial infections existed in the ancient world where the bacteria thrived on Iron in the colon from diet so it made sense to evolve better iron transport in our guts


  • Options
    #56
    crazy dude
    Registered Users Posts: 29 ✭crazy dude


    Another risk factor in Ireland is the recommendation of mega doses of vitamin C for winter colds. Vit C is really good at enhancing iron absorption in the gut it seems. The practise of taking vitamin C was started by Linaeus Pauling who won the noble prize for the structure of myoglobin and his fame lent wait to a small study in skiers he undertook one winter. Then an Irish pharmacologist popularised this idea with doctors, nurses and pharmacists here so it became fact in irish medicine although theres no evidence it actually prevents colds and no reasonable explanation why it should work


  • Options
    #57
    DrIndy
    Registered Users Posts: 3,461 ✭✭✭DrIndy


    In fairness for people with haemachromatosis - people think they should have a low iron diet - but in the end what happens is they end up nutrionally depleted because they are eating an unbalanced diet. Most clinics advocate to keep doing and eating well and if needs be - take off an extra unit or two over the year.

    Contact the IBTS for information on blood donating your units taken off - this is still a pilot service in many ways and may only be offered in certain parts of the country for now and the initial plan for them was to accept blood for the maintenance phase rather than the actual depletion phase which is where most of the blood is removed.


  • Options
    #58
    joestingle
    Closed Accounts Posts: 7 ✭joestingle


    Late diagnosis of Hemochromatosis can mean that you do end up with liver and kidney problems as well as possible diabetes so all this means that you have to be alert. Thankfully there is treatment for Hemochromatosis and you can get this treatment simply from going to the doctor every couple of weeks and then you can get back to being yourself again.So please take care if you suffering from this.


  • Options
    #59
    BostonB
    Closed Accounts Posts: 18,056 ✭✭✭✭BostonB


    Is there any Irish support/info group for this?


  • Options
    #60
    locum-motion
    Registered Users Posts: 5,143 ✭✭✭locum-motion


    BostonB wrote: »
    Is there any Irish support/info group for this?

    Irish Haemochromatosis Association.

    http://www.haemochromatosis-ir.com/


  • Advertisement
  • Options
    #61
    BostonB
    Closed Accounts Posts: 18,056 ✭✭✭✭BostonB


    Ah cheers...


Advertisement