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sikishrory

Haemochromatosis - Any expats living with this disorder?

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I was recently diagnosed with a genetic Iron overload disorder called Haemochromatosis (Hemochromatosis USA spelling).

I did a search and not much came up.

I thought I would ooen a thread just to see if there's many expats in Thailand dealing with this.

I would be interested to hear your experiences with doctors here and insurance as well as how it's affecting you.

I am 36. Had no obvious symptoms. Since the official diagnosis I now notice pains in my abdomen, weight loss, tiredness and realise these subtle feelings i've had awhile are attributed to this.

Insurance is also a tricky area.

I have good insurance through working on a yacht but am waiting to see whether my weekly venesections will be covered. Which I doubt. These plus the required tests are about 4500 a week.

Please share if you have something to contribute.

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I know a little bit about it because my father in law from my ex wife, with whom I was very close had it.

its from memory someone please correct me if I am wrong.

It is a hereditary disease  He was Irish and apparently the Irish have a much higher chance of getting it. (it is called the Irish curse, if you are Irish google Hemochromatosis Irish)

Your body makes too much iron in the blood and it gets stored in the liver. As far as i know it is a very easy condition to control, simply give  blood so often and your body makes new clean blood to replace it. You need to keep an eye on your liver. if gone untreated it can result in liver  damage or failure.You should have no problem if you keep on top of it.

http://www.irondisorders.org/Websites/idi/Files/Content/1273096/CRHUME blood facts.pdf

 

 

Edited by sirineou

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2 minutes ago, sirineou said:

I know a little bit about it because my father in law from my ex wife, with whom I was very close had it.

its from memory someone please correct me if I am wrong.

It is a hereditary disease  He was Irish and apparently the Irish have a much higher chance of getting it.

Your body makes too much iron in the blood and it gets stored in the liver. As far as i know it is a very easy condition to control, simply give  blood so often and your body makes new clean blood to replace it. You need to keep an eye on your liver. if gone untreated it can result in liver failure.You should have no problem if you keep on top of it.

 

 

That's pretty spot on. The only thing I would add is that it builds up in all your joints and other organs as well.

My initial thoughts was it didn't bother me that much and there's much worse diseases out there but I read a couple of cases tonight that changed my view a bit. 

One that stands out is a guy who passed away a couple of months ago in his sleep at the age of 45. He had a very early diagnosis at 20yo.

That really got me thinking and is half the reason I am posting this to see how people are coping here.

 

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18 minutes ago, sikishrory said:

That's pretty spot on. The only thing I would add is that it builds up in all your joints and other organs as well.

My initial thoughts was it didn't bother me that much and there's much worse diseases out there but I read a couple of cases tonight that changed my view a bit. 

One that stands out is a guy who passed away a couple of months ago in his sleep at the age of 45. He had a very early diagnosis at 20yo.

That really got me thinking and is half the reason I am posting this to see how people are coping here.

 

Not so much a disease as much as a hereditary condition. Stay away from high iron foods. donate blood often , and you should be alright my F.I.L lived to ripe old age with no symptoms, .

On the bright side you will be a hero at the blood donation offices.

  By the way, everyone should donate blood because as you know the new blood your body makes  is clean, and you don't only help others you help yourself.

 

Good luck. 

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5 hours ago, sirineou said:

Not so much a disease as much as a hereditary condition. Stay away from high iron foods. donate blood often , and you should be alright my F.I.L lived to ripe old age with no symptoms, .

On the bright side you will be a hero at the blood donation offices.

  By the way, everyone should donate blood because as you know the new blood your body makes  is clean, and you don't only help others you help yourself.

 

Good luck. 

Yea exactly. Giving blood is something I always wanted to do but never got around to. 

Some people with this can't handle weekly or feel lousy afterwards but I feel more energy afterwards and quite enjoy it.

Regarding the actual donating through blood banks. You can safely do that in many countries when your levels are reduced to normal and your in "maintenance" phase.

It may be different elsewhere in Thailand but at the moment in Phuket I am told it is not allowed.

I asked the nurse at hospital during my session last week and she said cannot in Thailand but she might've been assuming. 

There are 2 places in Phuket that accept donation. Vachira hospital and Thai Red Cross. I have contacted them both and it looks like it may be 2 seperate sets of rules. Red Cross said once per 3 months maximum. I haven't mentioned the disorder and if levels are normal I don't really see any harm in not mentioning it.

Anyway as you say there's numerous health benefits to giving blood and I can think of worse things to have than this.

 

Edited by sikishrory

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I have Haemochromatosis.

People with Celtic roots are more prone to have this generic condition that is passed on by both parents.  I was not diagnosed until in my 40s when it had already done some damage to my body. My late sister was also affected. 

Before being diagnosed I had been a regular blood donor so was inadvertently doing the correct treatment. Unfortunately the onset of the AIDS epidemic resulted in my local Red Cross refusing all males from donating for a period, and I didn't start again for several years. By then my ferritin levels were high. For the first year after diagnosis I donated weekly. (During this time the immature red cells made my blood valuable to UWA for research into malaria). 

Now in my 70s I only need to do so every 3-4 months to keep the levels low. I estimate I've donated well over 200 times. The blood is not used here, but has been confirmed by US studies to be safe for transfusion.

When I first came here Phuket Red Cross didn't want to know me, and after a delay, eventually started treatment with a Hematologist at BHP. The nurses have confirmed there are quite a few expats with the condition being treated. The process here is quite cheap in comparison to a specialist in Australia, even with insurance there.

After living with it for decades I probably know as much, or more, about HH than local doctors. PM me if you want to discuss any issues. 

 

 

 

Edited by Old Croc
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Some great information there guys lots of well informed people on TV

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1 hour ago, Old Croc said:

I have Haemochromatosis.

People with Celtic roots are more prone to have this generic condition that is passed on by both parents.  I was not diagnosed until in my 40s when it had already done some damage to my body. My late sister was also affected. 

Before being diagnosed I had been a regular blood donor so was inadvertently doing the correct treatment. Unfortunately the onset of the AIDS epidemic resulted in my local Red Cross refusing all males from donating for a period, and I didn't start again for several years. By then my ferritin levels were high. For the first year after diagnosis I donated weekly. (During this time the immature red cells made my blood valuable to UWA for research into malaria). 

Now in my 70s I only need to do so every 3-4 months to keep the levels low. I estimate I've donated well over 200 times. The blood is not used here, but has been confirmed by US studies to be safe for transfusion.

When I first came here Phuket Red Cross didn't want to know me, and after a delay, eventually started treatment with a Hematologist at BHP. The nurses have confirmed there are quite a few expats with the condition being treated. The process here is quite cheap in comparison to a specialist in Australia, even with insurance there.

After living with it for decades I probably know as much, or more, about HH than local doctors. PM me if you want to discuss any issues. 

 

 

 

That's great feedback. 

I live in Pattaya but am in Phuket for a few months due to work.

I have contacted red cross over fb to see if I qualify and it seems I do. The disorder probably changes that but if in maintenance at safe levels I think I will just go and not mention it.

From my experience trying to organise a haemotology appointment the other week, there's only 1 doctor in all of Phuket and she only works on Saturday.

Mission Hospital told me they have one also but I got the feeling they had no idea what I was talking about.

The doc here put me on fortnightly schedule but I am slipping in a few extra in Pattaya as well.

I work at sea so there are periods when I can't attend which would drag out the whole process. I have been feeling pretty <deleted> as well and just want to get to maintenance asap.

Maybe you know of other docs on the island.

I get my lab stuff done myself at Andalab to save cash a bit.

Does your insurance cover your venesections?

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" By the way, everyone should donate blood because as you know the new blood your body makes  is clean, and you don't only help others you help yourself."
 

interesting though I’m kinda skeptical..."is this true for other problems than iron?

 

good luck in any case

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5 minutes ago, cheeryble said:

" By the way, everyone should donate blood because as you know the new blood your body makes  is clean, and you don't only help others you help yourself."
 

interesting though I’m kinda skeptical..."is this true for other problems than iron?

 

good luck in any case

I give blood every 3 months here in Laos, (though I have to lie about my age because they have the usual crazy cut-off age of 60 years old, after which you're considered too decrepit to donate...).

 

I have regular testosterone injections, which can also lead to too many red blood cells in the body.  So donating half a litre now and again certainly does me no harm.

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4 hours ago, sikishrory said:

That's great feedback. 

I live in Pattaya but am in Phuket for a few months due to work.

I have contacted red cross over fb to see if I qualify and it seems I do. The disorder probably changes that but if in maintenance at safe levels I think I will just go and not mention it.

From my experience trying to organise a haemotology appointment the other week, there's only 1 doctor in all of Phuket and she only works on Saturday.

Mission Hospital told me they have one also but I got the feeling they had no idea what I was talking about.

The doc here put me on fortnightly schedule but I am slipping in a few extra in Pattaya as well.

I work at sea so there are periods when I can't attend which would drag out the whole process. I have been feeling pretty <deleted> as well and just want to get to maintenance asap.

Maybe you know of other docs on the island.

I get my lab stuff done myself at Andalab to save cash a bit.

Does your insurance cover your venesections?

Red Cross here didn't want to know me because I was over 60. If they are prepared to take you on that would be your cheapest option. 

The specialist who used to work at BHP recently returned to Bangkok so that left Dr S. who works there on Saturday afternoons. She is normally based at Vachira. I would advise you get an appointment with her there. It would be cheaper. If you are doing the tests at a clinic and venesection at the red cross, you probably don't even need a doctor to tell you when to donate. When you are back to normal levels it's easy to monitor. If I could find an outside phlebotomist I would do it all myself.  I also have coagulation problems (DVT), and am on warfarin, so need to monitor my INR.

Try to keep up with your schedule, the sooner you get the excess out the better for your overall health. As you would know when your blood gets overloaded with Iron it stores the excess in various organs (liver, pancreas, heart, and joints, etc.) where it can cause serious medical problems. Keeping it at normal levels will allow a normal life.

Give blood at regular intervals for the rest of your life and all will be good. Think of it as like a 90 day report.

(I self-insure) 

 

Edit:  Don't know how it works here, but the Red Cross won't take blood from you fortnightly. They may do so with a doctor's referral, but possibly will still refuse.  

Edited by Old Croc
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57 minutes ago, Old Croc said:

Red Cross here didn't want to know me because I was over 60. If they are prepared to take you on that would be your cheapest option. 

The specialist who used to work at BHP recently returned to Bangkok so that left Dr S. who works there on Saturday afternoons. She is normally based at Vachira. I would advise you get an appointment with her there. It would be cheaper. If you are doing the tests at a clinic and venesection at the red cross, you probably don't even need a doctor to tell you when to donate. When you are back to normal levels it's easy to monitor. If I could find an outside phlebotomist I would do it all myself.  I also have coagulation problems (DVT), and am on warfarin, so need to monitor my INR.

Try to keep up with your schedule, the sooner you get the excess out the better for your overall health. As you would know when your blood gets overloaded with Iron it stores the excess in various organs (liver, pancreas, heart, and joints, etc.) where it can cause serious medical problems. Keeping it at normal levels will allow a normal life.

Give blood at regular intervals for the rest of your life and all will be good. Think of it as like a 90 day report.

(I self-insure) 

 

Edit:  Don't know how it works here, but the Red Cross won't take blood from you fortnightly. They may do so with a doctor's referral, but possibly will still refuse.  

Yea I wish I could skip the docs altogether.

The one I saw in Pattaya Dr jiranuch was quite thorough and listened.

I turned up with odd cbc panel and overloaded iron asking if she could make sense of it.

She organised the dna test and first bleed that day.

Then had to go to phuket. Took the positive dna yest to Dr S. She didn't really explain anything at all but I had already learnt alot from the Heamochromatosis uk fb group.

I called Vachira previously asking if they had a haemotoligist. They said no. Prob just wanted to get me off the phone. I imagine being government prob a bit of a wait.

Hopefully I can get onto red cross soon. 

I'm also seeing jiranuch in Pattaya in a few days. Shes pretty good. Will be interested to see what she says.

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Four years ago this month, my father died from the complications of hemochromatosis. As others have stated it is a hereditary condition where both parents must have the genetic marker for it to be pass to their children. My grandmothers family came from Ireland and my grandfathers from Czechoslovakia. My father was in his mid 70's, before he was tested and diagnosed with the condition. He had weekly blood draws then monthly at his Dr's clinic for over a year. He never ate red meat again and restricted other foods with iron content from his diet. He also stop drinking or eating anything with vitamin C. Even after 3 years of blood draw maintenance and dietary changes his red blood cell count was still abnormally high. He continue receiving treatment till shortly before he died, at the age of 87 from multiple organ failure which included the liver and kidneys. 

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5 hours ago, tweedledee2 said:

Four years ago this month, my father died from the complications of hemochromatosis. As others have stated it is a hereditary condition where both parents must have the genetic marker for it to be pass to their children. My grandmothers family came from Ireland and my grandfathers from Czechoslovakia. My father was in his mid 70's, before he was tested and diagnosed with the condition. He had weekly blood draws then monthly at his Dr's clinic for over a year. He never ate red meat again and restricted other foods with iron content from his diet. He also stop drinking or eating anything with vitamin C. Even after 3 years of blood draw maintenance and dietary changes his red blood cell count was still abnormally high. He continue receiving treatment till shortly before he died, at the age of 87 from multiple organ failure which included the liver and kidneys. 

A very late diagnosis, the damage to his organs was probably past the point of no return,

Some doctors are very ignorant about the condition. At the time I told my doctor I thought I had it, but he said no, I can't because I didn't have diabetes mellitus.  He had to apologize after the blood tests proved him wrong.

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