Lurking pandemic - Hemochromatosis.

Bottle_of_Smoke · 08-03-2011 2:20pm

Worztron wrote: »

Is it practically impossible for someone with haemochromatosis to become anaemic?

Typicially yes. Obviously if they were being starved or given an iron free diet or some other mad reason it might be possible but if you were eating enough or a bit less food than neccesary it would be quite a challenge to become anaemic with haemo

Worztron · 09-03-2011 12:16pm

I went to get tested yesterday. I went to my doctor after a 12 hour fast. I'd though he would do the blood test (my father has a different doctor but took the blood test for him) but he gave me a form to take to the hospital. He wrote on the form for other tests such as Glucose, Lipids, LFTs, FBC, etc. He said that it was not for the haemochromatosis that I had to fast for but the other tests. When I got to the hospital, the nurse said they could not test for haemochromatosis because it is a hereditary condition (WTF? I don't see why that should matter). The nurse was very nice though and she is just following 'guidelines' from the incredibly stupid HSE. She took the blood tests for the other things.
Now I need to go back to the doctor to tell him what the HSE should have informed him about. No wonder the so called health service is in tatters.
I do feel sorry for the nurses as they do work extremely hard. Shame on Mary Harney.

Tar.Aldarion · 09-03-2011 3:28pm

Then where are you supposed to get tested? i did in some medical centre place, who also did all the other tests.

BostonB · 09-03-2011 3:34pm

I thought they did it though a blood test. Its probably a specific test outside the normal routine though. I can't remember.

Tar.Aldarion · 09-03-2011 3:39pm

there are blood tests and DNA tests I think. Not usually part of the routine but people should have it tested really, as it is fairly common

huggs2 · 09-03-2011 4:16pm

Tar.Aldarion wrote: »

there are blood tests and DNA tests I think. Not usually part of the routine but people should have it tested really, as it is fairly common

There are 2 blood tests that are needed to make a diagnosis of haemochromatosis, these are Serum ferritin which measures the level of iron in your blood and also Serum transferrin saturation which should be less than 45%.When i was diagnosed at age 58 i had a saturation level of 98% and serum ferritin of 2580.( should be approx. 50 to 250 i think)

Tar.Aldarion · 09-03-2011 4:32pm

Very high! This is why people should be tested at an early age, I was diagnosed as a teenager and can keep an eye on it.

Worztron · 09-03-2011 6:56pm

Tar.Aldarion wrote: »

Then where are you supposed to get tested? i did in some medical centre place, who also did all the other tests.

I will have to back to my doctor and tell him that he must take the blood sample and arrange it with Dublin (the only place they will test it is up in Crumlin). We have a totally inefficient health service.

BostonB · 09-03-2011 10:18pm

I thought I was tested Blanch. But can't remember now. I doubt my GP did it.

Worztron · 10-03-2011 9:47am

I got blood taken on Tuesday the 8th March for Glucose, Lipids, LFTs, FBC, etc. Is it okay if I get blood taken today for haemochromatosis? And thanks to huggs2 I now know that 2 tests are required.

huggs2 · 10-03-2011 1:20pm

Worztron wrote: »

I got blood taken on Tuesday the 8th March for Glucose, Lipids, LFTs, FBC, etc. Is it okay if I get blood taken today for haemochromatosis? And thanks to huggs2 I now know that 2 tests are required.

'

Alot of you questions can be answered here.

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

see "Preparing for your appointment" in your case.

huber · 20-06-2011 7:48pm

I've just started having blood taken as I've been recently diagnosed with Haemochromotosis, I've had 5 lots taken off in last 2 months, but now after blood test I've been told that I have to get a prescription and go on folic acid replacement tablets for 3 months. Anyone know why this is? Am I now anaemic?

sam34 · 20-06-2011 8:01pm

huber we don't allow discussion of personal medical situations here. you should ask your doctor for advice.

cnarf · 20-06-2011 8:03pm

You have had a lot of blood taken. Folic Acid is needed for the production of new red blood cells which will also use some of your excess iron. Keeping your red cell count up makes it safer to continue giving blood and reduce your iron concentration.

tyview · 13-09-2011 4:45pm

My mothers parents both have haemochromatosis, my grandmother died from it at 67 after self medicating for what she though was anaemia. My mother is one of 9, all of whom except her have it. I haven't met my biological father so I don't know if there is any history on his side. I get regulare bloods done for hypothyroidism and last week asked for my iron etc to be done too. The nurse rang me back today to say that my iron levels are normal (last yr they were below normal), my ferritin was normal (last yr below normal) and my transferin was high (last yr normal).

With the history, I'm considering getting the test for it but I was wondering how much it cost and where it can be done? (the nurse wasnt sure)

Chuck Stone · 13-09-2011 4:52pm

My Dad was diagnosed and treated for this recently.

Think I'll get a blood test just to be on the safe side.

FD1973 · 28-02-2012 5:43pm

Anybody have any idea on costs regarding the genetic test? I have to get it done on advice from my GP due to two sets of blood samples testing resulting in high iron content. He told me the costs are 'considerable'.....

huggs2 · 28-02-2012 7:07pm

FD1973 wrote: »

Anybody have any idea on costs regarding the genetic test? I have to get it done on advice from my GP due to two sets of blood samples testing resulting in high iron content. He told me the costs are 'considerable'.....

When my doctor found i had high readings i was refereed to a consultant (gastroenterologist) where he decided i needed to have a gene test and this was free to me. There are a lot of things to consider when going for a test so you do need to have a discussion with your consultant.You don't mention you age or readings or sex.

locum-motion · 28-02-2012 7:35pm

FD1973 wrote: »

... He told me the costs are 'considerable'.....

I find that surprising. When I was diagnosed, I was told that Haemochromatosis care is free in Ireland. I've never been asked for a cent.

RobFowl · 28-02-2012 8:46pm

locum-motion wrote: »

I find that surprising. When I was diagnosed, I was told that Haemochromatosis care is free in Ireland. I've never been asked for a cent.

+1 Apart from GP's fee's if you are a private patient the care and testing is free. Certainly my experience of the blood testing (in North County Dublin) is that there is no great cost involved.

FD1973 · 28-02-2012 11:16pm

Hi guys, thanks for the replies.... Im a 39 year old male, went for a check up and this is how I found out. Two sets blood tests came back with high iron and he told me the next stage was the genetic test. He said he had to do the first two tests before he could do the genetic test. He did say the costs are considerable and I just presumed that I would have to pay.... I got a scare when I heard this and then the whole thing about blood taken each week for two years, I was just thinking.... how much is that gonna cost............ I dont have health insurance, cant afford it!

RobFowl · 29-02-2012 12:54am

FD1973 wrote: »

Hi guys, thanks for the replies.... Im a 39 year old male, went for a check up and this is how I found out. Two sets blood tests came back with high iron and he told me the next stage was the genetic test. He said he had to do the first two tests before he could do the genetic test. He did say the costs are considerable and I just presumed that I would have to pay.... I got a scare when I heard this and then the whole thing about blood taken each week for two years, I was just thinking.... how much is that gonna cost............ I dont have health insurance, cant afford it!

All treatment will be free (covered by the HSE) so don't worry about that.

FD1973 · 29-02-2012 10:22am

Well that makes me feel a whole lot better! Thanks.... better book my appointment with the doc and get the test done so....

It amazing, never heard of this before and once I found out I likely have it and say it to people, loads of people have it!!!! crazy!!!!

BostonB · 29-02-2012 11:15am

FD1973 wrote: »

...the costs are 'considerable'.....

I don't remember being charged anything for it either. You should ask the doc to explain why they thought that. I wonder else they are wrong about.

Tar.Aldarion · 29-02-2012 12:40pm

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.

locum-motion · 29-02-2012 3:16pm

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 · 01-03-2012 4:16am

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.

FD1973 · 01-03-2012 11:07am

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?

Hentown · 01-03-2012 12:52pm

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.

Tar.Aldarion · 02-03-2012 10:55pm

locum-motion wrote: »

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?

I already know I have hemochromatosis. I was thinking of booking an appointment that they told me to years ago, but I haven't so far.

locum-motion · 03-03-2012 2:04am

Tar.Aldarion wrote: »

I already know I have hemochromatosis. I was thinking of booking an appointment that they told me to years ago, but I haven't so far.

Sorry, I misunderstood you.

FD1973 · 05-03-2012 11:20am

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.....

Socrates · 04-05-2012 11:56pm

Sorry if this has been brought up before but I donated blood for the first time this week. My iron levels were checked before donating and seemingly fine to continue.

Found out today that my dad is actually a carrier of hemochromatosis so I'm at risk of having it.

Are people with it allowed to donate blood? Do you need to make it known before you donate that you have it?

cnarf · 05-05-2012 9:53am

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

Go to page 12 where it covers haemochromatosis donors.

A Neurotic · 09-05-2012 11:36pm

cnarf wrote: »

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

Go to page 12 where it covers haemochromatosis donors.

I've been wondering about that. My Dad often bemoans the waste of his blood when he undergoes venepuncture in Tipperary. Good to see that they've got a special clinic set up in Dublin. Hopefully they'll get a few more going around the country.

pablo21 · 10-05-2012 8:17am

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 · 28-05-2012 11:01pm

Can anyone remember how long it takes for the genetic blood test to come back? I had mine taking on Tuesday of last week & the nurse had no idea how long it would take.

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.

locum-motion · 28-05-2012 11:33pm

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?

BostonB · 28-05-2012 11:59pm

I seem to remember my own GP saying something similar, and something along the lines of you could just get your iron checked regularly.

lorweld · 29-05-2012 1:42am

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.

lorweld · 29-05-2012 2:07am

Bit more about it here.

http://www.peoplesrepublicofcork.com/forums/archive/index.php/t-80430.html

& here http://www.lenus.ie/hse/bitstream/10147/44700/1/6286.pdf pages 15-18

snapperx · 12-06-2012 12:03am

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

snapperx · 12-06-2012 12:12am

Bloodmobile Beaumont Hospital
On 19th January 2009 a pilot programme was launched at
Beaumont Hospital to enable the blood of HH patients to
be taken and transfused by the IBTS. The idea was that the
Blood mobile would go every 4th Monday thereafter to
take the blood of HH patients attending Beaumont Hospital
Haemochromatosis Clinic.
The problem is that the venesection is free for patients at the
IBTS mobile clinic but the same patients would have to pay
€75 in the hospital. This may mean that patients, because of
this monetary incentive, may not disclose vital information
which would prevent them donating to the IBTS. Until this
charge is removed, the IBTS is not prepared to send the mobile
to Beaumont every month, as had been originally planned.

http://www.haemochromatosis-ir.com/files/docs/nl_spring09.pdf

Dubhlinner · 15-06-2012 1:30am

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.

galwaytt · 23-07-2012 11:31am

....also in Galway, and it took 18mths - 2 years for my diagnosis to be made. Was in/out of GP, Consultants etc for suspected Arthritis, Nuclear Bone Scan, Full Colour MRI, Nephrologist, etc etc. It was only a last-throw-of-the-dice thing, and an insistence by me that something was seriously amiss, and we start all over again, that GP suggested the genetic test, and did we find out.

Can't remember the exact figures now, but my transferrin levels were something like 200% and ferritin was sky-high as well ..??

At 45 now, my joints are shot, and I fall asleep at the mention of the word 'steak'...........

So, anyone using UCHG clinic ?- and do they do anything my GP doesn't do, or is there any difference ? I find I have to draw info out of people, as I suspect I have other issues impacted by it, but at €50/a go, I find it a one-way conversation most of the time (by me).

huggs2 · 23-07-2012 7:10pm

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.

cnarf · 24-07-2012 10:52am

Dubhlinner wrote: »

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.

Heterozygous means that you have one of a pair of genes for Haemochromatosis inherited from one parent. If you were homozygous you would have a pair of genes one inherited from each parent. Your Ferritin levels still need to be monitored as they can still be considerably higher than upper normal levels especially as people get older.

Chief Bromden · 20-10-2012 7:22pm

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..

huggs2 · 28-05-2013 9:44pm

Not giving medical advice here but just a little of my story.I was diagnosed 6 years ago at age 58.The blood tests came back with a ferritin level of 2580 and saturation of 98%. I had symptoms for years until i decided my self to have a full medical.The things that were wrong were:

Liver: Cirrhosis - diagnosed on biopsy

Heart: 1 Sick sinus syndrome ( Pacemaker fitted).
2 premature ventricular contraction (PVC) cured by a heart ablation.
3 Atrial fibrillation partly cured by another heart ablation.
Need to stay on heart drug which reduces it a lot.

Mental problems: Suicidal tendencies in the early stages and depression.Big improvement with drugs and psychiatric treatment in the first 2 years. Have to take drugs for the rest of my life.
Difficult to concentrate most times.
Poor memory.
Most times i feel like i have a fog in my head.

Joints: ache all the time, especially wrists.
Dry eyes. (need drops every day)
Vertigo.
Total loss of libido.

I had blood taken every week for 9 months. My Ferritin level is now normal, my liver function tests are normal. I have liver scan every year which shows no further deterioration. I have endoscopy every year which shows there are no varices (common in liver damage)
Today it feels great to be alive.
This site has great info on HH.
http://www.mayoclinic.com/health/hemochromatosis/DS00455

Marinjohn · 14-07-2013 8:19pm

I was diagnosed with this disorder last year after attending the doc to have my iron levels tested fearing they would be low due to a vegetarian diet ...the iron was at 500 so i gave blood every 2 weeks for a couple of months...To be honest i never had any symptoms whatsoever and never felt any different during the blood letting and after it was finished...I was 52 years old when I found out!

Lurking pandemic - Hemochromatosis.

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