Lurking pandemic - Hemochromatosis.

Tar.Aldarion wrote: »

havent been tested in years, although did an iron test at a health show recently, maybe i should book something if it's free, hmm.

If you had your iron tested recently, and you weren't informed of a problem we can probably assume you don't have Haemochromatosis.
Just because testing is free, that's no reason to get yourself tested again.
Doing so costs money, even if it doesn't cost YOU money.
Why would you deliberately divert the State's scarce resources away from those who actually DO need them?

sam34 wrote: »

I presume the doc meant that he had to do the two blood tests first prior to doing the genetic testing as if the costs of that are "considerable" (to the HSE, not the patient) there are likely to be guidelines about doing it and they can't order it without first having two abnormal blood tests.

Yes, I think this is probably what he meant, I misunderstood him...

What is the story on getting the blood taken? where do you go?

Well I got the blood taken for the genetic test today and no I dont have to pay for it, he laughed at me when I told him about it....

anyway my ferritin levels are near 100%, should be less than 50%, he says thats a good indicator of HC. My iron levels are about 25% over what they should be which is not too bad he says.

Gotta wait 10 days now for the results.....

http://www.giveblood.ie/About_Us/Publications_Guidelines/Annual_Reports/IBTS_Annual_Report_2007.pdf

Go to page 12 where it covers haemochromatosis donors.

My Dad was mis-diagnosed with Arthritis for years too and they even prescibed iron supplements. lucky they didnt kill him as his iron count was off the charts. You have to request a ferritin transfer test to rule out Haemochromotosis.

Hentown wrote: »

This is a brilliant forum guys.Thanks for all of the info! I have been receiving various tests over the last couple of years from heart palpitations to arthritis. One of the blood tests had to be repeated a number of times as some particular enzyme was raised,cant remember which one! Ended up with haematology in Blanch. The Dr.referred me on with suspected Rheumatoid Arthritis but took one last blood test to rule out Haemachromatosis. He sai that he would not call me back unless the results were positive. I got a call back letter this morning,so I am assuming the test was positive. I got a fright and went searching for info as previously I did not believe he would find anything. I was starting to think I was a hypochondriac as other allready stated.
There are 14 in my family, 4 of them have allready been diagnosed with rheumatoid arthritis including our Mother,and another three or so are complaining of similar symptoms. This apparently would be very unusual for this condition and having read articles on this site I am now thinking that they have nbeen misdiagnosed. But I will wait untill April to see the consultant for confirmation before going on a crusade.
Just wanted to say thanks guys.

lorweld wrote: »

...As regards one poster querying whether getting tested would have negative effects on a mortgage application, my sister brought her 5 year old son to get tested, her gp recommended her not getting him tested until he was older as it would hinder him getting a mortgage in later years.

I'm sorry, but there's something wrong there; I find your post very difficult to believe in its entirety.
A) Haemochromatosis is a disease that can be quite easily controlled, and if managed correctly poses virtually no risk to long term health or risk of death.
This correct management depends on early diagnosis, before any organ damage has occurred.
C) It's highly unlikely that a five year old kid is going to be looking for a mortgage in the next, say, 20 years.
D) There's no reason why a properly controlled Haemochromatosis patient is any more of an insurance/mortgage risk than many other conditions such as diabetes/epilepsy/being a smoker etc.
E) I do not believe that a responsible GP would deliberately NOT perform a test to diagnose a condition on those grounds. If the boy has Haemochromatosis, to deliberately delay a diagnosis for 20+ years is to condemn that boy to 20+ years of build up of iron in his organs, with possible organ damage occuring all the time. On the other hand, prompt diagnosis would mean that he would spend that same period of time having is iron levels managed. The upshot of this is that - come the time that he applies for a mortgage - he will be healthier if diagnosed now than if not. Therefore, prompt diagnosis means that he will be at less risk of dying before paying off his mortgage.

I'm not calling you a liar. I'm saying that I think somebody somewhere has misunderstood something. Indeed, perhaps I'm the one that has misunderstood something, and if so, I'd welcome correction.

Would any of the GP's on the forum care to comment? RobFowl, perhaps?

locum-motion wrote: »

I'm not calling you a liar. I'm saying that I think somebody somewhere has misunderstood something. Indeed, perhaps I'm the one that has misunderstood something, and if so, I'd welcome correction.

Would any of the GP's on the forum care to comment? RobFowl, perhaps?

No misunderstanding on my sisters part, she asked him twice as we are of the same opinion as you, early detention is key but he was adamant about it.

My Husband was diagnosed 5years ago after his sister was told she had Hemochromatosis all her siblings should be tested.

We live in nth Dublin and Beamount is where he was attending for his treatment to say it was free is not true. He had to pay for every blood lett I believe it was 60 euro every time until he reached 10 visits in a 12 month period as he was having monthly treatments we paid for 10 even though he had 12 and then it would start all over again in 10 paid visit cycles.
The clinic in the Beaumount at one time had a blood donating service set up in the carpark of the hospital the IBTS were taking the blood on a trial basis so no charge .My husband donated once and then was told the next time he went to a blood bank in Skerries that his was banned from giving blood and to get in touch with the IBTS.

I did ring them I was told the service for collecting blood was now finished the great moral issue had surfaced again and that he would have to go back to the clinic in the Beaumount and pay to remove his blood and it would be once again dumped .We don’t have a medical card we cannot afford to go the doctor never mind pay for his treatment if it was needed .I will direct him to this forum it is great to see people talking about Hemochromatosis

I have the mutations but it is heterozygous rather than homozygous so the doc said usually nothing to worry about.

Doctors here are free and always in a hurry so he wouldn't let me push him for more info. Can anyone explain what this means.

Think I'm gonna donate blood as regularly as possible to be on the safe side. Delighted and impressed the IBTS have set up a system that will allow them to put haemochromatosis sufferers to good use!

thanks in advance.

I feel your pain. I also knew there was something seriously wrong with me and i had a full medical which luckily had the serum ferritin and saturation test in it which showed i was very high indeed.I was referred to a consultant Gastroenterologist who sent my blood for genetic testing which came back positive for the HFE gene C282Y.I have been going to the UCHG clinic since.There is no charge for removing my blood.

Hi folks, I found this thread because I was diagnosed with hemochromatosis 2 years ago, and I'm a bit at a loss. Genetic tests showed that I'm a) not Irish (kidding!) and b) a confirmed heterozygote carrier. My ferretine levels are just under 1000, the point at which point my doctors would start bloodletting. I have stopped drinking alcohol altogether 4 months ago, but I still suffer from excruciating pain in my feet, knee joints (new), loss of libido (how did THAT happen?). I also show a lack of B12 and folic acid, despite having regular injections for B12 and pills for F.A. Maybe I'm just imagining things, but I wonder if I would benefit from phlebo anyway. FWIW, I'm male and... 50. I know this is not a medical board, and I understand how difficult it is to give advice, but I truly wonder if my GP - who is a star otherwise - is not grasping the dangers here.

Mod Note Medical advice is not allowed on this forum. This post is a bit too close to requesting it..