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 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.

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




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

 

Exclusive Black Friday Sale!

Get over 40% off selected products, including prams, baby carriers, cloth nappies, sleeping bags and much more! 24 hours only, on May 6 - register now for your special code.

Kelly Clarkson shares first photos of son

Kelly Clarkson has shown off the first photos of her son, Remington Alexander Blackstock.

5 childbirth myths that need to be busted

Birth is an unpredictable, mysterious process that intrigues us all, and there is a lot of misinformation out there.

Mum of three fatally shot by toddler while driving

A US mother has been shot by her toddler while driving on a highway in Wisconsin.

All you need is one minute to work out

The seven-minute-work out is old news. Research shows the effectiveness of going hell-for-leather for just one minute.

Pregnant women needed to join diabetes study

Pregnant woman in country Australia will help Adelaide researchers figure out why cases of type 1 diabetes have doubled over the past two decades.

Just announced: the Mountain Buggy Unirider

It's the perfect solution to combat those toddler meltdowns when they no longer want to be in a pram but can't walk long distances.

Authorities euthanise dog that fatally bit a newborn baby

A pit bull mix that fatally bit a 3-day-old infant last week has been euthanised, authorities said.

The push for Medicare to fund lactation consultants

While meeting with a lactation consultant can make an enormous difference to a new mother, it's not a service that is available through the public health system.

Why it's perfectly natural to dislike other people's children

Members of a popular forum are fiercely debating whether it is acceptable to dislike a friend's child.

Woman gives birth on plane, names baby after airline

A pregnant woman who unexpectedly gave birth on a flight has named her new baby after the airline, Jetstar.

Heartwarming photos show the joy of adoption after foster care

Children living in foster care can feel like their future is less than clear. But that uncertainty disappears the day they are adopted by their "forever family" 

'Oh my god, it's a baby!' Mum shocked to give birth

When the cramps started to kick in, Klara Dollan just assumed a painful period was starting.

Mum's Facebook plea: 'Help me find my daughter's father'

Kerryn has a unusual present planned for daughter Imi's 13th birthday celebrations - she hopes to be able to be able to give the soon-to-be the teenager her first ever photo of her dad.

Is it possible for your house to be too clean?

Our houses are cleaner than ever before. But how clean is too clean? Could a sterile home be putting your family's health at risk?

Millions of Monkeys: puzzles that grow with your toddler

Here's a puzzle that grows with them; the Puzzle Grow Pack by Millions of Monkeys.

Baby names from Britpop

If you grew up in the 90s you might want to look to the genre of Britpop music for baby name inspiration.

What to eat and drink when you have gastro

When you catch a bug that causes acute infectious gastroenteritis (gastro), your stomach and intestinal tract become inflamed, causing diarrhoea, nausea, vomiting, abdominal cramping and pain. The last thing you probably feel like doing is eating.

'To this day, I owe her my life'

Would I have survived if I hadn't crossed that street?

Why baby Sonny needs you to vaccinate your children

Caitlin is a firm believer in the importance of immunisation to protect children from harmful and deadly diseases.

Five-year-old's photo captures beauty of motherhood

There is no make-up or special outfits and hairdos, but the five-year-old boy who took this picture captured the essence of motherhood as well as any professional photographer.

Babies know whether you are naughty or nice

Studies have shown that infants in the first months of life try to avoid dealing with social wrongdoers - for example, sharing less with them and helping them less - and they expect others to, too.

 
Advertisement
 

Top 5 Articles

Advertisement
 
 
 

What's hot on EB

The babies who are one in 70 million

Bethani Webb was excited to find out she was pregnant, but the first time mum did not realise she was carrying four babies not one.

Exclusive Black Friday Sale!

Get over 40% off selected products, including prams, baby carriers, cloth nappies, sleeping bags and much more! 24 hours only, on May 6 - register now for your special code.

Cafe offers breastfeeding mums a free cup of tea

A Sydney cafe is offering breastfeeding mums free cups of tea in a bid to show support for the right of women to nurse their babies wherever they choose.

To snip or not to snip? When the decision is not clear cut

Jamie Oliver, who considered a vasectomy, is to be a father again. A fellow dad reflects on his own decision 11 years ago

Doctors stunned by rare twins born almost six weeks apart

To everyone's surprise, Kristen Miller "kept doing better each day", keeping her second baby safe.

Baby book ideas for modern parents

Before my son was born I was given a lovely baby book full of blank pages waiting to be filled with weights and heights and first words.

The adorable smile of a baby seeing his mum clearly for the first time

There is no doubt seeing their child smile for the first time is an unforgettable moment for parents everywhere.

Mum tells how toddler 'nearly hung himself' in cot mishap

When Alison Johnson put her 18-month-old Caleb down for a nap, she had no reason to believe her son was in any danger.

Babies are still switched at birth? Yes, it can happen

All my panic and tears aside, my biggest question looking back is about the kind of security measures used in the maternity ward.

Doctors slammed for taking selfie with newborn

Everyone who visits a mum in hospital in the days following childbirth wants to get a photo with the new baby.

ergoPouch Twosie Sleepsuit for winter breastfeeding

Finally, there's a way to keep warm while breastfeeding through winter.

Health check: How long does sex 'normally' last?

What to do with this information? My advice would be to try not to think about it during the throes of passion.

When breastfeeding sucks: fixing common problems

From niplash to tight boobs, biting to milk supply issues, Pinky McKay looks at common breastfeeding issues and how to solve them.

10 things I've learnt in my first six months with twins

Six months on we're all still alive, and the more we get to know each other the easier the days become.

Mum's loving kiss leaves baby fighting for life

Kirsty Carrington thought nothing of giving her newborn son a kiss, little did she know it would leave the baby fighting for life.

When doing chores is your new 'me time'

After children, 'me time' looks a little different.

Get going: 14 travel strollers for families on the move

A stroller can make or break travelling with a baby or toddler. Here are 15 great single travel stroller options.

10 ways toddlers are terrific

It always pays to remind yourself of how terrific toddlers can be - they're little like this for such a short time

 

ENTER NOW

Do your kids love bananas?

This is the comp for you! We have $800 worth of Myer gift cards and boxes of Australian Bananas to be won. Entry is simple: just post a pic of your little one enjoying a banana in the comments of the FB post to enter.

 
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.