Jump to content

Hemochromatosis anyone?
Newly diagnosed sort of

  • Please log in to reply
10 replies to this topic

#1 unicorn

Posted 10 July 2012 - 10:27 PM

I have a referral for a Haematologist and need to make an appointment to confirm the diagnosis, it is something my doctor has been looking into for me for a while, it has dragged out mainly because I'm a bit (very) slack getting blood tests done and making follow up appointments.
So once I have a diagnosis what happens next? My doctor mentioned venesections, do you donate that blood? I don't know if I fit the criteria for donating, I will look into it.
She is concerned about my liver, will that repair itself once my iron levels go down? I don't drink, have never had hep A, or any other illness that could affect my liver.
What sort of diet are you on?
I will be asking the specialist when I go to see him, but not sure how long that will so thought I would put the feelers out.
Any advice you have would be much appreciated.

Edited to add, what about your children? Have they been tested?

Edited by unicorn, 10 July 2012 - 10:28 PM.

#2 ubermum

Posted 10 July 2012 - 10:33 PM

Are you female? Women don't tend to have as many issues due to losing blood monthly.

My ex boss had it. he used to give blood once or twice a month (I think) and that was about it. He definitely wasn't on a special diet and he drank quite a bit.

#3 Le-a

Posted 10 July 2012 - 10:38 PM

My dad has it. He has blood drawn every so often, but no special diet and no liver problems. He reckons the blood doesn't get donated, which is a bit of a shame.

#4 unicorn

Posted 10 July 2012 - 10:40 PM

Yes I am female, my period is usually quite light if at all, I can go years without one (PCOS), that is why she mentioned possibly needing to give blood.

#5 whydoibother

Posted 11 July 2012 - 10:02 AM

not a goood news story ut my DH great aunty died from liver cancer from long term Hemochromatosis I gues back in the old days they didn't treat it/know about it and it lead to liver damage

#6 PrincessPeach

Posted 07 December 2012 - 01:10 PM

Sorry, just saw this thread...

I was diagnosed last year with it, my dad has it & my aunt (other side of the family) has also recently been diagnosed.

I have to have blood tests every 12 months to monitor my iron levels, but my dad goes 6 monthly.

Vennisections are dependent upon the results of the blood tests.

Stating the obvious, but stay away from any multi-vitamins with iron or vitamin C in them.

Not sure about your liver repairing itself (though i think it might), but another thing to watch for is diabetes, as the conditions are linked, my GP also checks my BSL at the same time as my iron.

#7 FizzlingFireboxes

Posted 08 December 2012 - 07:04 AM

Hi, dh biological father found out he had it a few years ago. 1 bil has it quite badly, he has blood taken monthly and it has affected his liver. He no longer drinks I'm not. Sure about diet changes. Other bil has it but not so seriously he is checked every few months I think. Dh was tested but his dr confused him and he hasn't gone back to another dr to be tested. Yes I know he should be tested again.

#8 rjflc69

Posted 14 December 2012 - 12:22 PM

My DH has this, was diagnosed about 18 months ago.  His iron levels were sky high and he has been having fortnightly blood donations to try and reduce his levels.  Luckily he has no obvious liver damage at this point but is on 6 monthly check ups with his heamatologist.  He visits the Red Cross and donates his blood but it can be done at a pathology centre (but obviously doesn't get used for good).  If the case is you need to have regular venesections the specialist will complete a form which needs to be given to the Red Cross/Pathology lab and needs to be renewed annually.

I was also tested after his diagnosis and have one of the genes (he has both) which means that all our kids will need to be tested when they get older.


#9 i-candi

Posted 15 December 2012 - 10:08 AM

DH found he was a carrier after having high iron levels.

We were told to have DS tested and as we were having other bloods done we tested for hemochromatosis. DS has the disease, can't remember if I was tested or not.

Right now it's a wait and see as it doesn't effect you until you are older. I just make sure DS doesn't have multivitamins with iron. Funny enough when he was preschool age he had low iron and we had to give him iron supplements!

From what I understand there are two genetic mutations (? is that the right word?) one is a more severe form, lucky for DS he has the milder disease of the two.

We'll get DD tested if she needs bloods done in the future.

#10 Lim Lam

Posted 15 December 2012 - 10:19 AM

My Aunt ( mums sister) has it and has blood drawn very month, hers is actually used by the Blood bank as its so iron rich.
My other aunt (mums brothers wife) so no blood relation also has it and gives blood monthly.
They both a big drinkers and only my mums sister follows a strict diet as she has diabetes too.
My Dr said I dont need to be tested yet.
Goodluck x

#11 olikat03

Posted 15 December 2012 - 03:17 PM

Last year my doctor thought i had it but it turns out i was eating too much tuna, one of those small tins every day. So i guess if you are after diet recommendations stay away from tuna LOL. It probably wouldnt help you if you had Hemochromatosis

1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users


Mum's desperate plea as whooping cough alert issued

A desperate mother has shared a heart-breaking video of her baby struggling to cope with a coughing fit caused by pertussis.

After three years, Ranjini is free at last

Ranjini, the Sri Lankan mother of three who has spent more than three years in detention after being deemed a national security threat by ASIO, has been freed.

Pregnant woman 'safe and sound' thanks to Bataclan concert hall hero

A pregnant woman who clung for life from a second-storey windowsill during the Paris terror attacks is reportedly "safe and sound".

Why are due dates important?

From the moment you discover you are pregnant you look forward to your baby's arrival.


Welcome Christmas with your family with the Essential Baby Christmas section with lots of gift guides, activities and tips for a happy holiday.

The contest that takes advantage of desperate couples

who would use the pain of infertility as an advertising tool? Who would take the personal tragedies of infertile couples to promote their own business?

Win ABC Shop prize pack for Christmas

What a boon it would be to have your toddler's Christmas gifts covered this year. We have two awesome ABC Shop prize packs to give away to two lucky winners.

Hero dad lost his life protecting hundreds of others

He was an innocent man caught in the middle of a murderous attack on his city. But instead of running the other way, Adel Termos made a heroic decision that saved the lives of many others but cost him his own.

Text service aims to fill the void for new fathers

A new text service for fathers aims to guide men through the life changing experience of having a child.

How to grow your own groceries

Follow these 31 tips to save money and enjoy time in the garden in the kitchen.

5 great things about having a baby

Having a baby is exhausting, hard work. It's also one of the greatest joys of your life.

Sick baby could die without scarce special formula, mum says

Lizzie Cann is down to her last three tins of a special formula in short supply.

Women sue over birth control pills

More than 100 women who became pregnant after taking birth control pills have filed suit in the US.

'Their footprints are never too small to leave an imprint on this world'

When she took the pregnancy test and two lines showed up, we were both ecstatic. We couldn't wait to meet our baby.

Squeaky shoes foil adorable toddler

We're probably all familiar with the pouty bottom lip and tightly crossed arms of a tot mid-strop.

Best bands to get families dancing

I'm not talking music made especially for kids here. I'm talking music from my childhood and it's the kind to really get down to (or not).

What are pregnant women Googling?

Pregnancy is a huge change for any woman, so it's natural we'll have questions - and turn to Google to ask them.

'I want him to forgive me'

As the mother of a baby born in detention, this asylum seeker feels guilt for bringing a new life into an uncertain world of incarceration.

The unethical claims helping drive demand for formula in China

Chinese parents are being led to believe formula will enhance their child's brain development, sparking a huge demand and impacting Australian stock.

Coffee could help you live longer

New US research found people who report drinking three to five cups of coffee a day are less likely to die prematurely from heart disease, suicide, diabetes or Parkinson's disease.


What's hot on EB

Win one of two ABC Shop prize packs in time for Christmas

What a boon it would be to have your toddler's Christmas gifts covered this year. We have two awesome ABC Shop prize packs to give away to two lucky winners.

Beautiful 'now and then' images of premature babies

They are stunning photos that the parents of these beautiful no doubt feared they may never see.

Physios warn pregnant women not to crunch like Michelle Bridges

Experts are urging pregnant women not to do exactly as Michelle Bridges does when exercising, or they risk developing rectus abdominus diastasis.

Penny-pinching supermarket shoppers switching in droves

Half of Australia thinks it can get cheaper groceries by switching supermarkets, and about one in four of us have already switched.

Baby breastfed by wrong mother after hospital mix up

A newborn baby has been breastfed by a stranger after a NSW hospital bungled the identities of two newborns, devastating one mother and potentially exposing the newborn to health risks.

Nurses invent skin to skin c-section drape

The determination of three US nurses to provide immediate skin to skin contact to mothers delivering their babies by caesarean section has led to the invention of a unique surgical drape.

Baby's first photo shoot features a special guest

You can always be sure of a few things not entirely going to plan during a newborn shoot – little accidents are almost par for the course – but this shoot was memorable for a whole other reason.

We are not the family you think we are, I promise

Kids have a way of presenting a completely inaccurate impression of you, as parents, and as a family.

The hidden harm of foetal alcohol syndrome disorder

Experts believe many children diagnosed with ADHD might actually have FASD and that the number of people suffering from the condition across the country could be as high as 500,000.

Anaesthetist facing charges after ignoring woman's pain during caesarean

An anaesthetist could be punished after telling a woman enduring an "excruciating" painful C-section that she was not actually in pain.

When your baby starts life in NICU

Our daughters are finally home after spending nearly four weeks in the Neonatal Intensive Care Unit (NICU) at Wellington hospital.

How to save for a deposit while renting

As hard as it sounds, it is possible to save money when you rent, and certain things can be done to build a deposit faster.

Medications pregnant women should take, avoid, and think about

There are actually very few medications that must be absolutely avoided during pregnancy.

Paid parental leave uncertainty a growing concern

Eight months out from the due date of the government's PPL cut, some expectant parents are facing an uncertain time.

7 commandments of using the internet as a parent

What you need is careful, objective and repeatable science. Not anecdotes or old wives' tales, but data.

A rethink on screen ban for kids under two

With new guidelines being developed, the discouragement of use below two years of age is being revised.

10 things I want my wife to know

It's on those crazy days that I must remember to stop and let her know some things she needs to hear.

Better education about SIDS needed as deaths plateau

The number of sudden and unexpected deaths in infancy has decreased in NSW for the past 15 years but the most recent report into child deaths reveals the decline has plateaued.



Can't decide?

Check out the Essential Baby Names section for some inspiration

Essential Baby and Essential Kids is the place to find parenting information and parenting support relating to conception, pregnancy, birth, babies, toddlers, kids, maternity, family budgeting, family travel, nutrition and wellbeing, family entertainment, kids entertainment, tips for the family home, child-friendly recipes and parenting. Try our pregnancy due date calculator to determine your due date, or our ovulation calculator to predict ovulation and your fertile period. Our pregnancy week by week guide shows your baby's stages of development. Access our very active mum's discussion groups in the Essential Baby forums or the Essential Kids forums to talk to mums about conception, pregnancy, birth, babies, toddlers, kids and parenting lifestyle. Essential Baby also offers a baby names database of more than 22,000 baby names, popular baby names, boys' names, girls' names and baby names advice in our baby names forum. Essential Kids features a range of free printable worksheets for kids from preschool years through to primary school years. For the latest baby clothes, maternity clothes, maternity accessories, toddler products, kids toys and kids clothing, breastfeeding and other parenting resources, check out Essential Baby and Essential Kids.