HI how likely is it I have haemochromotosis!

G'day Butterfly123

The only way to confirm genetic haemochromatosis is by a genetic test. This I presume can be organised through your GP. The best recommendation I can make is for you to become a blood donor now. In Australia the Red Cross would be the first stop. Phlebotomy is the only treatment for HH. This creates a win/win situation for you and the Red Cross. You do not need to get your GP to send you to the Red Cross, just turn up and become a regular donor. You gastroenterologist can determine how often you should go but there is nothing to stop you starting yourself. You might also think about joining you national Haemochromatosis Association to get more information and assistance. I am a member of Haemochromatosis Australia. They are fantastic.

Good luck and take care

May the magnet be with you!

butterfly123,

When I was tested for Hemochromatosis all they did was a blood test and they told me that from that, they were able to determine that the form that I have is genetic. They said the reason for mine was a mutation that I have (I did, at the time, suggest that maybe it was brought on by illness as I had recently had mono but they said that wasn't the case). I'm not 100% sure how it works, but I'd said that generally it's genetic.

Neither of my parents have it though, which is why I was at first a bit confused about it. But obviously I now know that you can be a carrier of hemochromatosis while never actually having it.

And your levels are at 3000? Do you mind if I ask how old you are?

I was lucky and I went to the doctor very early. Ironically enough, when I was younger I was iron deficient so when I was experiencing the same tired feelings and fatigue, I assumed I had anemia but surprise! It was the opposite. So I was diagnosed with it when I was... 21 I think. At that time my levels were at 500 which is already bad considering you're meant to be somewhere around 50, I believe.

& bonesaus,

In Australia they let you donate? I'm in Alberta, Canada, and they don't allow me to. Before I signed a waiver for my blood to be experimented on (in a Hepatitis study) they would mark my bag of blood with "NOT FOR HUMAN TRANSPLANT" and it made me feel like some sort of alien.

Even now with my levels being much lower, I'm still not allowed to donate. Plus, I wouldn't want to go to the Alberta Red Cross because they don't give you IVs there, and I need one while I have a phlebotomy or else I pass out.

Hi,

Thanks for your comments. Since I last posted I have been to gastro who did blood tests and also the genetic test, to this date I am awaiting result for that. I have an appointment to go back in February to receive all of the results. It just seems such a long and anxious wait. The gastroenterologist said they will not begin to treat my iron overload until they know exactly what is causing it. However on a visit to my gp she was able to tell me that all my blood results are back and all look normal, the only one we are waiting on is the genetic test. She confirmed my ferritin level is still 3000 and tsi is is still 89% and I find it difficult to comprehend at these levels why my liver is fine, I have been to cardio and everything ok and go for a CT scan which I am told nothing untoward is expected from that. megan 36105 you asked my age and I am 49 yrs old and a uk citizen living in the uk. I will keep you posted of any further developments.

Obviously I'm not a doctor so I don't know the reasons as to why they don't want to treat your high iron levels asap, but that doesn't make much sense to me. I know that a lot of doctors will just accept that you have iron overload if over a period of about 6 months your levels don't drop significantly. That's what mine did, anyways, and that's also what my hemochromatosis specialist did as well. They gave me no other tests other than blood tests.

For me, they told me that something like a liver biopsy was a possible testing option, but they decided not to go that route because of possible side effects from having one done. They thought the risks outweighed the benefit. Basically what happened was that I went for numerous blood tests and they did genetic testing on them, and that's how they figured out that mine was hereditary.

I was never sent to a gastroenterologist, either. I'm not sure why they're sending you there - unless maybe because you're older than me they want to be positive? I don't know. I just find the whole thing confusing because your levels are very high and I just feel like they'd want to start treatment right away since the only way to get rid of the iron is through blood letting (although I have heard there is a pill that you can take that will break down the iron, but that's only used in cases where the person can't give blood).

To be honest though, my aunt's doctor was doing the same thing to her. I haven't spoken to her about it in a while but for about a year or something like that, she was going for blood tests and her iron levels were consistently high but her doctor said they didn't know what it was. I just feel like if everything else is fine, then why aren't they giving you phlebotomies already? I kept telling her that I'm positive she has iron overload but I think she was just in denial.

Are you also tired a lot? Does your skin have a slight bronze-ish or yellow tint to it? Are you thirsty a lot? Do you need to urinate a lot? I feel like you wouldn't since your liver is fine but do you ever have abdominal pain? Do you have arthritis pain? Diabetes? All of those can be symptoms of iron overload. I also know that most of the time people are diagnosed when they are between ages 40 and 50 - women are generally slightly later than men due to menstrual cycles.

And in terms of your liver being fine - so was mine. Granted, I'm a lot younger than you so the iron didn't have time to store around my liver like other people who are diagnosed when they're older, but I do know that it takes a very long time. If I were to go untreated, it wouldn't affect me, most likely, until I was in my 50s are so. That's when damage would start to be done (at least that's what I'm understanding).

Ow, ow! My brain hurts when I read or hear such stories. The fact that your TS% is 89% should be enough for them let alone your fe of 3000. I knew a fellow when he was 22 and had a Fe of >4000. He had a liver biopsy and he did not have a liver problem

I did not have a liver problem when it was finally diagnosed at aged 47 after having severe symptoms for 9 years. It affects everyone differently. I complain that drs in Australia are in denial about HH but to hear it coming from the UK as well ... the UK is the seat of the modern Celt who started all this. Not to mention Scandinavia, northern Europe and France where ancient Celts also lived.

Gastroenterologists claim they own Haemochromatosis, but the best person to see is a Haemotologist. If you keep having problems regarding venesections, seek out a young Irish doctor. I was talking to one recently in Australia and he cannot fathom why Australian drs are in such denial of this disorder.

One in 80 Irish have Haemochromatosis but they seem to have dropped the ball in supplying venesection treatment to rural areas.

With a fe level like that you will probably need venesections twice a week for a while. Make sure they take you down to <30 to get it all out of your organs before you increase the time between venesections.

i am assuming you are a woman so be aware, that apart from all the other symptoms, your oestrogen levels may be decreased by hh too and you will suffer those symptoms. if you are male, maintaining testosterone levels will be a problem.

heaps of good luck to you, and keep us posted.

to="" get="" it="" all="" out="" of="" your="" organs="" before="" you="" increase="" the="" time="" between="" venesections.="" i="" am="" assuming="" you="" are="" a="" woman="" so="" be="" aware,="" that="" apart="" from="" all="" the="" other="" symptoms,="" your="" oestrogen="" levels="" may="" be="" decreased="" by="" hh="" too="" and="" you="" will="" suffer="" those="" symptoms.="" if="" you="" are="" male,="" maintaining="" testosterone="" levels="" will="" be="" a="" problem.="" heaps="" of="" good="" luck="" to="" you,="" and="" keep="" us="" posted.="">

i am assuming you are a woman so be aware, that apart from all the other symptoms, your oestrogen levels may be decreased by hh too and you will suffer those symptoms. if you are male, maintaining testosterone levels will be a problem.

heaps of good luck to you, and keep us posted.

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