Home › Forums › National Chat › hemochromatosis????
- This topic has 18 replies, 8 voices, and was last updated 16 years, 5 months ago by Dinomum.
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April 17, 2008 at 2:50 pm #2462Taylor5Member
Hi there
Does anyone out there suffer with this? My sister and my niece have just been tested positive for it and we have all been advised to get tested too.
Should I look into getting ds checked for it too or is he too young?
Any info about it please.April 18, 2008 at 9:19 am #59802GismoMemberSorry to hear about your sister and niece..i have never heard of this.
April 18, 2008 at 11:52 am #59865DinomumMemberI was at the doc yesterday about this. It is basically too much iron in the blood and it generally builds up over the years which is why it normally only shows up in people in their 30s and 40s so your ds will not have to be tested.
It is very treatable though and apparently quite common even though i only heard of it about 6mth ago. It is a genetic thing and can be hereditry so you should get tested for it. I was tested yesterday, as my dp is a carrier of it (his mum has it). I had to be tested cos if I either have it or am a carrier, then chances are our dd will have it. If you google it there is loads of good info on the net.
Your gp will do the test it is about €120 but money well spent for peace of mind. Best of luck, be thinking of you.
April 18, 2008 at 1:57 pm #59899Taylor5MemberThanks Dino
I was down in the gp’s today and was told its 120euro and that ds wouldnt be tested untill well into his teens if not later.
Might be worth getting dh tested too to see if he is a carrier. Im always tired and have huge black bags under my eyes even thought I drink plent of water and sleep very well. The doctor often does a live function test but its always clear… dont then they test too often for this even though its very common.
How often does you dh give blood and where does he give it in the OLOL or does he use the moble blood banks. I was told If I have it I’d have to give blood every week untill under control…. can they use your blood, if so its not a bad thingApril 18, 2008 at 4:34 pm #59931DinomumMemberIts my dp’s mum that has the full symptoms, he is only a carrier, so he doesnt actually have full blown symptoms of it. His mum had to get blood out every week at first, then once every 2 weeks and went to OLOL to have it done…dont know if it can be used for blood bank, I wouldnt think it could but mabye if someone had anemia it could be useful. She only had to go for about a month or so, once they take out the excess iron you just manage the condition then. Like you I have the awful tiredness so that was part of the reason for testing…its such a nuisance being knackered all the time.
Best of luck to you anyway hope all works out ok 😀
April 18, 2008 at 7:46 pm #59936Taylor5MemberYou will have to watch the kids in later year in case they have it. God love his poor mum, my sister didnt get it off our mum…. the gp was laughing as my mother has such low blood she has to get Liver injections every few weeks and she eats very well and healthy for an older woman
I was to ring the nurse today and make an appointment but never got around to it, so I’ll ring on Monday.
April 21, 2008 at 10:38 pm #60137Taylor5MemberOff to get my bloods done tomorrow, so fingers crossed
April 21, 2008 at 10:45 pm #60141Jenny!!!Membergood luck. 😕
April 22, 2008 at 9:08 am #60158YvonneMemberBest of luck today Taylor.
April 22, 2008 at 12:26 pm #60185DinomumMemberBest of luck Taylor, hope all goes well 😀
April 22, 2008 at 2:40 pm #60246scole1Memberhey pin cushion how’s the ole arm….
April 22, 2008 at 4:28 pm #60268Taylor5MemberAll went well, have to wait 10 days for the results….. my wallet is 120 euro lighter. There goes my plan to buy some new shoes in McDonnaghs sale (3 for 2 on everything, bags shoees etc..)
May 7, 2008 at 12:18 pm #61185Taylor5MemberJust got my bloods back from the doctor and thank God I got the all clear. I dont have it and Im not a carrier so wont have to worry about ds in the future.
Just high levels of chelosterol (sp) 5.8, any ideas on how to reduce this. What good foods can reduce your levels?May 8, 2008 at 1:04 pm #61227bunnacurryMemberMy mother in law had this. Unfortunately she wasn’t diagnosed until two years ago and it was much too late for anything to be done. If its caught earlier it is very treatable, however you have to avoid fortified iron products such as many cereals and breads. If boht parents are a carrier than the chances of the child developing it is 1 in 4. A child cannot be tested until they are in their teens because it will not manifest until then. My husband and all his siblings got tested once they knew the consequences of it and because as their father past away some years ago they didn’t know if he was a carrier. Luckily my husband tested that he wasn’t a carrier. There are different types of carriers as well. It was €80 when my husband got it done, about two years ago. Before that it was free but with the increase in the amount of people being tested has warranted a fee by the main two labs that process it in Dublin.
As my husband isn’t a carrier I don’t have to get tested or worry about my daughter being a carrier. Anyone who is a carrier should ensure that their partner gets tested to try and rule it in or out for their children.
Good to hear that your test results came back clear.
May 8, 2008 at 4:06 pm #61232AnonymousInactiveTaylor the main thing with high cholestoral is too cut out fried foods, and eat plenty of wholegrain and increase exercise. My cholestoral is 5.1, doctor told me last week. Told to cut out fried foods. Havent had fried food in years, am walking every day and eating fish 3-4 times a week. I have even cut out my intake of bread, i am only having about 2 slices a week. Moan over 😳 😳
Bought myself Flora proctive youghurts & milk, see if that works. -
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