New diagnosis

Your doctor is right keeping an eye on you iron studies is the best thing to do if you decide to give blood at any stage dont mention the H word as soon as you do they jump on you and say oh no your doc need tosign a form just go in and donate youll feel better in your self if anything as for your daughter im not sure she is like my 14 yr old son its good we found out now not later but just keeping an eye on it is all you can do 

I am a 64 yo carrier and my husband is a carrier too. My Hematologist says he only cares about phlebotomies, if we overload iron and I do, to a moderate level. My husband does not so he hasn't even bothered to get a genetic test. The reason I know he is at least a carrier is our daughter inherited both of our defective genes. My dad had two defective genes and I suspect my husband's Irish father, to have passed it down to my husband.  So, if you don't overload, no problems. If you do as your daughter appears to do, she will need regular phlebotomies. She should guard against iron rich prenatal vitamins when and if she gets pregnant, too. I was exeedingly high in iron during both preganancies and they is prob why my joints were getting destroyed by my 50s.  Hematologist don't label people as much any more and it can get confusing when our GP try think labeling is important. My GP was hyper about that and kept me from getting treatment for years. I had to arrange for an appt with a Hematologist while my GP was away on vacation so I could gain his input. Glad I did!

You are genetically disposed to haemochromatosis.  Definitely get monitored every year without fail.

Contact your country's haemochromatosis association for information and check out their websites, and others, if necessary.  Make sure your daughter educates herself on the disorder as well so that, hopefully, nothing slips by her.  Don't depend on dr's as their knowledge can be rather scant.

Donating blood will be beneficial to you all.  Just go as ordinary voluntary donors every three months.

 

Patient.info is a great place, you have found the most responsive forum for information. There seems to be more severe cases and mild cases depending upon a combination of DNA factors. I'd ask the doctor to explain what he means by "two markers." Literally, ask him to spell it out. Call him tomorrow, don't let him/her get away with not explaining things to your satisfaction. If you get some specifics you can do some internet research on it. Have a good evening, rest and relax.

If he just sees that you have a mutated gene it means you may or may not overload. I was told that and began overloading a few years later.  That's why you probably should have an iron panel done from time to time.  You may never overload. You can even had two gene mutations and not overload. No one knows unless they get their iron panel test from time to time. Once you find that you overload, even to a mild degree, it would be wise to give blood and get regularly tested.  If you never overload, good for you! You have nothing to worry about. Maybe that's why he is cavalier about it.  My first appt with a hematologist I was told I would NEVER overload but, that wasn't the case. It's rare, maybe 1%, but not unheard of. My new Hematologist said we may not have discovered another gene that is resplonsible for my iron overload.  But, he doesn't care at all that I don't have two mutated genes revealed as yet. He just looks at the numbers and keeps my iron under 50 to help preserve my organs. Good thing I went back to have it checked since I had elevated liver enzymes for more than 20 years.  After just two phlebotomies, my liver enzymes went back to normal ranges again. Praise God!

Hi

This illness baffles me,I have h h,but 2 of my sister's are anaemic

I told my family to get tested for high ferritin levels, but the consultant

Told me on Friday it's they need to looking at saturated iron levels as

This is more accurate,I have been told by several doctors that females

Are less likely to get full blown hemochromatosis, because of menstruations

And in your case if your iron levels are normal and you have no organ

Damage I would say just keep it monitored???

I would not wish regular venesections on anyone, since starting in am

Completely drained of energy, as soon as I sit down I'm nodding off

Lightheaded all the time,and aches and pains in my joints???

They have reduced venesection to fortnightly I hope this improves my

Symptoms????

Good luck to you

Cheers philx

Our daughter has two mutated HH63d genes and is also anemic.  Apparently you can overload and have anemia. She has one half the month and then the other at age 27.  But her Hematologist says when she is postmenopausal she will need to get iron chelated out of her body other ways aside from phlebotomies.  At least we solved the problem of her becoming a slug about two weeks out of every month. It is somewhat rare, I think.