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.
TIA

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

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.
thanks

#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 mummy.to.one

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.

Fiona

#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

 

For and against

Should Blue Ivy have been at the VMAs?

Many were quick to condemn Beyonce and Jay Z after appearing on stage at the MTV Video Music Awards with their two-year-old daughter, but others thought it was a sweet family moment. What do you think?

Toddler attacked at gym creche

Two-year-old girl Eva Ness was left with a black eye and bite marks on her face and body after an altercation with an older child at a health club's child-minding facilities. Now her parents are calling for the centre to be closed.

Pregnancy a tricky matter of timing for FIFO couples

Manipulating rosters, coordinating 'conjugal' visits, working on site with your partner; getting pregnant can prove stressful for FIFO workers.

WIN a $100 RedBalloon for Dad

Enter now for your chance to win 1 of 5 $100 RedBalloon experience vouchers. Helping you make Dad's Day EXTRA HAPPY.

Carseats have twice as many germs as a toilet

Most parents know their child's carseat is not always squeaky clean, but they might not realise just how dirty it really is.

Doctors remove foetus from 'medical marvel' after 36 years

Doctors in India have removed the skeleton of a foetus that had been inside a woman for 36 years.

Nine months in six seconds: new parents' Vine clip a hit

We?ve seen some memorable time-lapse pregnancy and birth announcement videos before. Now one new couple has taken it to the extreme, capturing it all in just a six-second Vine video.

Sonia Kruger speaks of baby joy

Celebrity mum-to-be Sonia Kruger has spoken candidly about using donor eggs and IVF to fall pregnant at age 48.

Dressing to not impress: life through the eyes of a three-year-old

When it comes to getting dressed, my three-year-old has only one criterion: ?I don?t want to look beautiful.? And now I've worked out why.

Special nappies made with love for angel babies

Angel Baby Nappies make and provide tiny bereavement cloth nappies for pre-term stillborn babies and premature babies who pass away in the NICU.

Inside the brain of a tantruming toddler

What's going on in your child's mind in the lead-up to a tantrum? And what?s the best way to respond?

5 secrets to a long-lasting relationship

When it comes to keeping your relationship strong, it?s what you do - and not what you want - that really matters.

When 'furbabies' meet real babies

I am obsessed with my dogs, and can't imagine loving them any less once my baby arrives. But that doesn't stop everyone from telling me I will.

The least popular baby names of 2013

Looking for a baby name that?s nowhere near the top 10 ? or even the top 1000? Try the bottom five.

'I was so sleep deprived I crashed my car'

There are no laws regulating driving while tired, but statistics show that driver fatigue is one of the top three contributors to the road toll.

Why are there so few sexy maternity bras?

Rather than feeling ashamed of their post-baby bodies, women should be free to buy lingerie that makes them look attractive and pretty - no matter what stage of life they're in.

Toddler Alliyah one step closer to first trip home

She has lived the first 14 months of her life in a hospital intensive care unit, but Alliyah Broadby's parents hope to finally take their little girl home with them.

'Put people before IVF profits': IVF pioneer Alan Trounson

IVF could be done for hundreds of dollars in Australia instead of $8500 if clinics stopped charging what ''the market will handle'', a pioneer of the technology says.

Expectant parents urged to swap the pub for bub

Nearly one in five women drink while pregnant, but a current campaign is trying to drive down that unhealthy statistic.

Nutella supplies threatened by bad weather

There's bad news for fans of Nutella, the gooey, chocolatey hazelnut spread.

The cost of growing your own vegies

Does it make financial sense to grow your own veggies, or are you better off ordering produce from the local food co-op?

Breastfeeding mums less likely to suffer from PND, but all need support

A new study has shown the a complex relationship between a mother?s intention to breastfeed, her ability to do so, and postnatal depression.

Win back some precious time and get FREE coupons

Membership to eBay's Bubs? Corner is free and includes a $10 coupon to spend on nappies each month - a win for multitasking mums!

Download now: Essential Kids Activity Finder app

Got bored kids? Quickly find the best activities for kids wherever you are in Australia with the Essential Kids app.

 
Advertisement
 
Advertisement
 
 
 

What's hot on EB

Win back some precious time and get FREE coupons

Membership to eBay's Bubs? Corner is free and includes a $10 coupon to spend on nappies each month - a win for multitasking mums!

Do you suffer from Precious Firstborn Syndrome?

Testing ?no more tears? shampoo in your own eyes, warming cucumber sticks so they're not cold straight from the fridge, waking a sleeping baby to check they?re still breathing: these are all symptoms of Precious Firstborn Syndrome.

Ezra's tragic death not in vain, mum says

Little Ezra was a "Harry Houdini" who loved trying to escape the family home. Now, after his tragic death, his parents are doing what they can to help others.

7 mistakes old hands make with new babies

As I sat across the table from my friend ? me, a seasoned mother of three; her, a brand new mum ? I thought of all the mistakes an old-hand parent can make when visiting a newborn baby.

Video: When adults act like children

Ever wondered what would happen if adults were allowed to act like children? This dad's hilarious video clip will give you an idea of what life would be like.

Mums hit hardest as flu cases skyrocket

The number of confirmed cases of influenza in Australia has doubled the number for the same time last year - and women are 25 per cent more likely to get it.

The mum who had four babies in nine months

Feeling exhausted due to the demands of caring for a baby? Imagine the life of this mum, who gave birth to three boys and one girl in just nine months.

Everything baby at Big W

Lowest prices on everything baby, only at Big W. Sale starts August 4 and ends August 20 2014.

Smiggle is painting the town red!

We have 3 Red Smiggle prize packs to give away! Enter by posting a photo of something red to your Instagram.

Going viral

Mum gives birth at school

After four decades in the industry, pest controller John Birkett couldn't believe what he found in one woman's bedroom.

Personalised baby gifts

We've scoured the internet to find gorgeous personalised keepsakes and nursery decor to record baby name and dates. They make great gifts for christenings, name days and birthdays! (All prices in AU.)

 

Mind, body, beauty, life

Making time for me

We look at your wellbeing, covering health, relationships, beauty and fashion, mind and body.

 
Advertisement
 
 
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.