HAEMOCHROMATOSIS

Pejay · Guru

HAEMOCHROMATOSIS

jules47 · The Happy Helper

Pejay - not good news re the iron disorder, but treatable luckily. I suppose if you are a carrier, your kids would have to be tested?

My mum had Alzheimers - one time she didn't recognise me at all, asked my dad who the girl talking to her was. It is a terrible disease, along with dimentia, would not wish it on my worst enemy.
Take care, and keep on visiting your mum - you will feel better because you do.

Gerty Dancer · Guru

My daughter-in law has this condition, inherited from her Dad, and my grandson may have it too. Once you know you have it, its a good idea to inform your kids so they can get tested, when managed it doesnt make a lot of difference in life.... daughter-in-law eats no red meat to reduce her iron intake but is very fit and healthy.
Sorry to hear about your Mum Pejay, dememtia is cruel for everybody. We still dont know the cause, scary. Hang in there June

neilnruth · Guru

Thanks for sharing that pejay. It is so much easier to cope with something when you know what it is. Hopefully it won't affect further down your line but as Gerty says, best to let the rest of the family know. I have a genetic condition and I have no idea where it came down from.
I feel for you regarding your Mum. I'm just going through this with my Dad and trying to support Mum after she made the decision to put him into fulltime care. It IS a horrible disease. Mum says, she feels like Dad has died but he's still there - but the person she visits is not the man she married.

allinone · Senior Member

Gerty Dancer wrote:
.....when managed it doesnt make a lot of difference in life....

So why bother managing it? Are we just making others richer when there are other things that could make a real difference for sickness.

This disease seems to be the 'fad' at the moment even advetrtised on the TV in Tasmania. Even met two people in the last month who have been 'diagnosed'.

But maybe this site has some helpful info http://haemochromatosis.org.au/

Gerty Dancer · Guru

allinone wrote:
Gerty Dancer wrote:
.....when managed it doesnt make a lot of difference in life....
So why bother managing it? Are we just making others richer when there are other things that could make a real difference for sickness.
This disease seems to be the 'fad' at the moment even advetrtised on the TV in Tasmania. Even met two people in the last month who have been 'diagnosed'.
But maybe this site has some helpful info http://haemochromatosis.org.au/

Allinone, you bother to manage it, cos you dont feel well, doh as Pejay said. When the iron levels are closer to normal you feel better, smile and have a better chance of living a long life! smile smile smile

Pejay · Guru

Trust me, this is not a 'fad' - it can be very serious. The previous greenkeeper at our local bowls club has it real bad, and they cannot get his iron levels down, so much so that in the last 12 months he has had 2 heart attacks!!
Yep, it appears I may be one of the lucky ones, and it goes without saying that my daughter, sister and nephew have been told and I strongly suggested they get tested.
I understand it comes from northern European origins way way back, but with the likes of the Vikings moving around it has come up in other areas, in particular Ireland, and it has come down through the grenes. I also understand it could be in about 1 in 200 caucasians in some form or another.

Gerty Dancer · Guru

Pejay, I was thinking... I wondered if it is possible that this is what caused you to have osteoporosis so severely and so young? Don't s'pose you'll ever know for sure.

neilnruth · Guru

Pejay, I know it's only a typo but it made me smile "has come down through the grenes." Is that bowling, cricket or some othr type of grene? Glad you are so positive about the whole thing. And I agree, managed illnesses are far better than non-managed ones. Hope you have much better health now they've found this. And it is another example of a 'regular' GP getting so used to seeing you that they have missed it. I never think it hurts to sometimes see a GP other than your own. All the best.

Sheba · Guru

Allinone wrote :"This disease seems to be the 'fad' at the moment even advertised on the TV."

It started to become repetitive on the Imparja Satellite TV at my place 2 days ago. Never heard of it on TV before Pejays' post.

Bit wierd.

Cheers,

Sheba.

-- Edited by Sheba on Saturday 30th of March 2013 08:14:24 PM

buffy61 · Senior Member

allinone wrote:
Gerty Dancer wrote:
.....when managed it doesnt make a lot of difference in life....
So why bother managing it? Are we just making others richer when there are other things that could make a real difference for sickness.
This disease seems to be the 'fad' at the moment even advetrtised on the TV in Tasmania. Even met two people in the last month who have been 'diagnosed'.
But maybe this site has some helpful info http://haemochromatosis.org.au/

I imagine the reason it needs to be managed is because when you have a high amount of red blood cells the blood is thicker and is more inclined to clot...eg. cause strokes or heart attack.

Fad? cant say I have seen much in the media about this disease. And why 'diagnosed'??? I would imagine it is diagnosed after a simple blood test that checks haemaglobin. I have a low haemaglobin so have regular Hb levels checked.

I know low Hb can make me feel tired and generally pretty crap. No doubt having too many red blood cells would make you feel crappy too!!

The dog lady · Guru

I daresay a lot of the "new" diseases we hear about these days have surfaced for 2 reasons. 1) We have better diagnostic facilities than ever before, and 2) we are living longer so many of the illnesses which really make themselves felt in later years would have been irrelevant when most people were dead by 70. At 55 I was diagnosed with thyroid tumors and graves disease. In earlier times people who had this (symptoms are mostly mental plus "the shakes") were sent to insane asylums. My grandmother may have had it, but as she died in her 50's from cancer it was irrelevant. I have spinal stenosis, my father may have had it but seeing he died at 59 it didn't matter much. Get the drift? My last husband didn't believe in "modern medicine", said it was all quackery and "natural" was best. He died at 55. I would be dead now without modern medicine. Always get a second opinion, and be glad for modern medicine!

petengail · Guru

I got my results today. I do not have haemochromatosis but I do have very high levels of iron in my blood. I start my blood "donations" next week. Two of my friends do have the disease. After prolonged exposure to high levels of iron in the blood the real damage is chirrosis of the liver.

Pejay · Guru

Thanks Petengail, I was beginning to feel like I was alone, yet when you strt talking about thi disorder, it is surprising just how many are affected. Have you had the genes test to find out if you may be a carrier? But, all the best for next week - how often will you have to make your 'donations'?

Hey Gerty, Haemochromatosis is not treated with just diet alone, the only treatment that is effective is the Venesections - had my first one yesterday, now fortnightly for a while, then a check to see if I need to have them more often of not quite so often.

And Buffy, it has nothing to do with Haemaglobin, in truth it is not a blood disorder, it is an iron overload in the blood, and as Petengail says, it can affect the liver - thankfully mine is OK.

I also undertand that there is a link to the osteoporosis, so finally by adding 'everything' up, I finally have an answer to all the bits and pieces and can finally can get going with a positive treatment plan and down the track, I should be a happier little Vegemite.

What makes you smile though, is that every so often I would get myself a tub of multiviatamins 'cause I was feeling so tired and to try and make me feel a tad better, only (now) to find out they contain iron!! No flamin' good anyway! Swisse make a multivitamin without the iron (or iodine) in it - yay, now I can really start to jump around.

As for NeilnRuth - yep must have been the bowling grenes I was talking about!! Just shows how tired I was becoming.

I have let my family know, but my sister (true to form) was more interested in who I sent the email to with the info, than in the actual info! She carried on about putting the email addresses in the BCC section -even family?? But I was SO tired - it wasn't even 8pm and I was heading off to bed, that I told her to 'go your hardest'. Haven't heard from her since!!

Ah, ain't life grand?

Gerty Dancer · Guru

Are you feeling better yet Pejay?
Maybe your sister is tired too, that's why shes difficult. ???
My daughter in law is young enough to cycle monthly, and the low-iron diet apparently does the trick for now.... (maybe she's had to "give" blood and didn't tell me.)

petengail · Guru

Hi there Pejay, didnt notice your reply until just now. I have had the gene test and I am not a carrier, thank goodness. However as I did mention I have very high levels of iron in the blood, about 5 times the level it should be. Looks like I have to give three blood "donations" over the next 6 months, starting this wednesday morning. Have also stopped drinking beer and drastically reduced my overall alcohol intake. Will let you know the results when I have my next blood test. The lady who does my blood tests commented how common Haemochromatosis is these days. She said that it was probably being diagnosed early now because of improved diagnostics.

-- Edited by petengail on Monday 8th of April 2013 03:32:42 PM

bronnie · Senior Member

Hi there Pejay, I have 2 cousins who have this and they give blood, and I was tested in March and found out I am a carrier, so my daughter will be tested soon. It is not a fad, can be treated, but if not diagnosed can be quite serious......

cheers Bronnie

Pejay · Guru

Thanks guys for your responses, I really do appreciate your input. Am having 'one of those times' where things are going wrong all at once.

All went well with my 'donation' last week - next one next week. Just waiting for all the info to come from the Haemochromatosis Assn so I can read up on it all.

Have not heard from my sister since I told to to go her hardest, and that's fine by me.

Visited Mum for our fortnightly visit last Thursday, all is not well on this 'front' but ..... yeah. It's times like this that I pull out my notepad and pencil and pen a ditty or two. It helps.

ShortNorth · Senior Member

The management of haemochromatosis is important to the quality of your future life, so this post is going to be longer than most. But hang in there, there's good news for Grey Nomads.

I was diagnosed with haemochromatosis about sixteen years ago - the condition is common in those with olive skin complexions and is also known as 'Bronze Diabetes'. My observant GP detected an irregularity and pulled me in for detailed tests, which showed I had an extreme level of iron stores. I was put on a 'crash' program of weekly venesections for about four months, slowing to fortnightly for about four months, then monthly for about six months.

At the end of the program, a review was held, and I was recommended to have venesections at quarterly intervals. I maintained this for a few years, but got complacent and started to extend the time between visits, until I got to the stage of one venesection every two years. My GP rapped me over the knuckles, and put me on a correction program of monthly venesections for twelve months. He stressed the importance of maintaining the quarterly sessions for the rest of my life.

Initially, they were done by the Pathology practise next door to my GPs practise, but my GP called me in for a discussion, where he said he wanted to get me registered with the Australian Red Cross Blood Service as a 'Theraputic Donor'. My first session was just a consultation with the ARCBS doctor (no blood taken), I was given a Donor Card and a reference number. A fixed term program was arranged between my GP and the ARCBS doctors. It makes it easy to maintain, I just call to make an appointment, present my card, they bring up my donor history on the central computer database, take my blood, and it's all 'done and dusted'. At the end of each program a review is made and a new program arranged, as required. My condition management has got to the stage where I can use the ARCBS just like a regular donor (still registered as a therapeutic donor) at quarterly intervals without having to have new programs made as long as I go every three months, I can maintain that for the foreseeable future. I keep a venesection log book with details of every session with date, Hb and blood pressure readings this is useful to see any trends that may push my iron stores up again.

Using the ARCBS is far better than using Pathologists for two reasons

A. - the Australia wide network of ARCBS branches means there is always one somewhere (within reason) near where I am at the time - for Grey Nomads, this is great as you can time your maintenance of your venesections as you tour around the country. It also means your records are consolidated in one place rather than scattered across a number of pathologists all over the countryside.

B. - once below the accepted iron level threshold, the ARCBS can use your blood rather than throwing it away, and in so doing helps to save the lives of other Australians that has got to be a Good Thing !!!

http://www.donateblood.com.au/ready-to-donate/donor-centre

If you are not already registered with the ARCBS as a therapeutic donor, get your GP to initiate the process, and your management of your condition is much easier and more relaxed.

Even if you dont have haemochromatosis, it is still a good idea to donate blood at regular intervals anyway. You never know, the life you save could very well be your own !

Regards, Brian

Sheba · Guru

http://www.donateblood.com.au/ready-to-donate/donor-centre

ShortNorth · Senior Member

Sheba, thanks for adding the link - I don't know why the link I put in my post didn't convert to an 'active' link.

Gerty Dancer · Guru

I find, as long as you use "reply" or "advanced editor", you have to press the space-bar after typing the link. It works like magic!

allinone · Senior Member

ShortNorth wrote:
Using the ARCBS is far better than using Pathologists for two reasons ....Regards, Brian

Excellent advice for travellers thanks for putting this information up.

I gave blood for a while and my iron levels were lowering and was on the border for not being allowed to give donations. So contrary to their advice (eat more meat - yuk) I had green smoothies daily and my iron levels picked up and rose for many donations.

But being on the road have not continued, so your info about that is a fantastic reminder that I can continue to donate while travelling....

Pejay · Guru

Would love to give my 'donations' through ARCBS but where we live, the Blood Bank Mobile Service only comes every three months (which will be my goal to get down to giving every three months) but at the moment with 'giving' every fortnight, that is just not practical, and we would have to have a (minimum) 3 hour round trip to either Brisbane or the Sunshine Coast to access their facilities ..... so for the time being, it's done at our doctor's surgery.

Pejay · Guru

Oh wow!! Had another blood test last week, and my iron level is back down to 'normal' - for the moment, after three 'donations' in quick succession. Will have to have another blood test at the end of July to see just how quick it takes for my iron levels to go up again. So I guess I am back to a roller-coaster ride of a different sought. But the main thing is that I am starting to get some energy back and can go about doing things again, although by the end of a busy day, I am back to being very tired as I don't have anything in reserve at the moment. So it will be interesting to see what my iron level will be come end of July. However, I would like to thank everyone for the support that you have given me here on the forum.

Gerty Dancer · Guru

Great news Pejay! Even those of us who don't have Hema-thingy get tired at the end of the day. You can improve your fitness by walking etc, but from experience, its best to take it sl o w - l - y!

Pejay · Guru

Would love to improve my fitness, but when you don't have the energy to 'do' anything - and that includes housework - have to get my reserves up to a reasonable level first, then watch me go! I understand that to really get the 'full picture' on where this thing is going will take quite a bit of time to basically 'map out' how it works in me - every person is different on how it affects them.