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sikishrory

Haemochromatosis - Any expats living with this disorder?

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9 hours ago, sikishrory said:

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.

I'm of the opinion some doctors in Thailand know little about the condition. It's uncommon in the Thai race.

That's why I would prefer to monitor it myself and decide when to have venesections. I just need to find someone to do it.

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18 hours ago, sikishrory said:

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.

 

According to the article link  I send you. Hemochromatosis blood is better quality than normal blood. 

it seems they are behind the times, so I would simply not mentioned.

 

 

 

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3 minutes ago, Old Croc said:

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.

My father wasn't diabetic either. He had no other health issues that required him to take prescription drugs before his diagnosis. The only time I remember him ever being hospitalize was when he had his rt big toe surgically reattached after it was amputated in a lawnmower accident. 

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6 hours ago, sirineou said:

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

Quite right. If caught early, and doctors are now more aware, there is no reason for it to affect your life apart from the need to donate regularly.

 

In my case damage had been done, I've had 2 hip replacements, have CKD, Chronic Tophus Gout, DVT, hypertension and some other minor issues. I'm in a wheelchair probably for the rest of my life.

This is why I'm emphasizing you should get rid of the poison (iron) from your organs as quickly as possible and keep the levels in your blood low for life.

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9 hours ago, Old Croc said:

I'm of the opinion some doctors in Thailand know little about the condition. It's uncommon in the Thai race.

That's why I would prefer to monitor it myself and decide when to have venesections. I just need to find someone to do it.

Agree. Regardless of what they know. Wish I could find somewhere to do that

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I've got it, its hereditary. Caught it about 2 years ago.

 

It was caught during a normal blood test as part of a check up where my feratin levels were close to 1000 (normal max for males is 400). As a result, I did the genetic test and I have one of the two genes. Having one of the two genes doesn't automatically mean your iron levels will go up, but in my case it did. Also followed up with scans of vital organs, and thankfully, no damage.

 

Given it is a bit of creeper condition, the first time many people find out about it is when its too late and their organs are damaged and diabetes like conditions have set in.

 

As others have mentioned, giving blood is basically the only treatment for it. The problem is getting your ferratin back into the normal range.

 

In Thailand the condition isn't widely recognized as Asians don't get it. It is an Irish/Northern European thing. As a result, my doctor told me that if the Thai red cross does know about the condition, they wont accept your blood.

 

Now, the question for you is how to get your levels down to 'safe' levels. My doctor has told me the 'gold standard' level is around 50. This may be too low for some (it is for me) so we try and keep it around 100. For me, this equates to a three monthly blood donation.

 

But I had to get it down from 1000 to 50 to begin with, and to be honest, three monthly blood draws of 500cc isn't going to do it. We tried that and the ferratin levels didn't budge. It ended up needing withdraws ever 10 days or so for about a three month period, during which any real physical activity or exertion is really exhausting.

 

Given the frequency, I could only do that at the hospital. However by law they aren't allowed to use the blood, so its disposed of.

 

After about a year of playing around with getting it down, as said, I'm now at the stage of needing a 'blood letting' once every three months. I do this at the red-cross. I've been advised- don't tell them I have it. The blood is still useable, but because it isn't common in thailand, the redcross haven't bothered going through all the regulatory approvals to get it allowed. The same blood is perfectly acceptable in Australia and NZ where I have donated, as it would be in Ireland or the UK.

 

If you are based in Thailand, then doing it via a hospital will be the only way to get it down quickly (which is needed). When you have it down to about 50-100 range, the need to do a blood letting will reduce and you can probably do what I do and sneakily do it via the redcross. But that is only available once every three months as per their rules.

Edited by kiwiaussie

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6 hours ago, kiwiaussie said:

I've got it, its hereditary. Caught it about 2 years ago.

 

It was caught during a normal blood test as part of a check up where my feratin levels were close to 1000 (normal max for males is 400). As a result, I did the genetic test and I have one of the two genes. Having one of the two genes doesn't automatically mean your iron levels will go up, but in my case it did. Also followed up with scans of vital organs, and thankfully, no damage.

 

Given it is a bit of creeper condition, the first time many people find out about it is when its too late and their organs are damaged and diabetes like conditions have set in.

 

As others have mentioned, giving blood is basically the only treatment for it. The problem is getting your ferratin back into the normal range.

 

In Thailand the condition isn't widely recognized as Asians don't get it. It is an Irish/Northern European thing. As a result, my doctor told me that if the Thai red cross does know about the condition, they wont accept your blood.

 

Now, the question for you is how to get your levels down to 'safe' levels. My doctor has told me the 'gold standard' level is around 50. This may be too low for some (it is for me) so we try and keep it around 100. For me, this equates to a three monthly blood donation.

 

But I had to get it down from 1000 to 50 to begin with, and to be honest, three monthly blood draws of 500cc isn't going to do it. We tried that and the ferratin levels didn't budge. It ended up needing withdraws ever 10 days or so for about a three month period, during which any real physical activity or exertion is really exhausting.

 

Given the frequency, I could only do that at the hospital. However by law they aren't allowed to use the blood, so its disposed of.

 

After about a year of playing around with getting it down, as said, I'm now at the stage of needing a 'blood letting' once every three months. I do this at the red-cross. I've been advised- don't tell them I have it. The blood is still useable, but because it isn't common in thailand, the redcross haven't bothered going through all the regulatory approvals to get it allowed. The same blood is perfectly acceptable in Australia and NZ where I have donated, as it would be in Ireland or the UK.

 

If you are based in Thailand, then doing it via a hospital will be the only way to get it down quickly (which is needed). When you have it down to about 50-100 range, the need to do a blood letting will reduce and you can probably do what I do and sneakily do it via the redcross. But that is only available once every three months as per their rules.

my ferritin was 479 and tsat 95% last week after 1 bleed.

Last couple of weeks I have really noticed feelings in my abdomen. Not like pain but just a dull kind of ache. Especially in mornings. It feels like they're just slowly stewing in a way. Thing is I reckon I have felt this and the tiredness for a long time but the diagnosis just brought my attention to it and made me notice what's happening isn't just normal feelings. 

There are some fb groups that have really been invaluable to me as I still haven't had a doctor tell me anything yet except I reckon I prob know as much as they do about it now.

I'm not sure where you are but I believe Vachira (Phuket) also take blood donations which with red cross would be 2 per 3 months. Only issue there is Phukets only haemotoligist works there.

Other thing is weight loss. It used to be hard to keep weight off but now I find I am skinny that people started commenting about it. Not sure but I hope it's because of this.

I'm also consistently about 98 with blood sugar so hopefully fixing this will stop that upward trend as next step is prediabetes.

 

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15 minutes ago, sikishrory said:

my ferritin was 479 and tsat 95% last week after 1 bleed.

Last couple of weeks I have really noticed feelings in my abdomen. Not like pain but just a dull kind of ache. Especially in mornings. It feels like they're just slowly stewing in a way. Thing is I reckon I have felt this and the tiredness for a long time but the diagnosis just brought my attention to it and made me notice what's happening isn't just normal feelings. 

There are some fb groups that have really been invaluable to me as I still haven't had a doctor tell me anything yet except I reckon I prob know as much as they do about it now.

I'm not sure where you are but I believe Vachira (Phuket) also take blood donations which with red cross would be 2 per 3 months. Only issue there is Phukets only haemotoligist works there.

Other thing is weight loss. It used to be hard to keep weight off but now I find I am skinny that people started commenting about it. Not sure but I hope it's because of this.

I'm also consistently about 98 with blood sugar so hopefully fixing this will stop that upward trend as next step is prediabetes.

Levels under 1000 are unlikely to do any real damage to your body. I was up to that level again when I restarted treatment in Phuket after neglecting it for several years.

When first diagnosed years ago I was over 2400. My sister was about 800 at the same time - woman don't usually retain a lot of iron until after menopause. I once bumped into an old acquaintance in the blood bank who said he had HH also. He was somewhere over 5000 from memory. 

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8 hours ago, sikishrory said:

my ferritin was 479 and tsat 95% last week after 1 bleed.

Last couple of weeks I have really noticed feelings in my abdomen. Not like pain but just a dull kind of ache. Especially in mornings. It feels like they're just slowly stewing in a way. Thing is I reckon I have felt this and the tiredness for a long time but the diagnosis just brought my attention to it and made me notice what's happening isn't just normal feelings. 

There are some fb groups that have really been invaluable to me as I still haven't had a doctor tell me anything yet except I reckon I prob know as much as they do about it now.

I'm not sure where you are but I believe Vachira (Phuket) also take blood donations which with red cross would be 2 per 3 months. Only issue there is Phukets only haemotoligist works there.

Other thing is weight loss. It used to be hard to keep weight off but now I find I am skinny that people started commenting about it. Not sure but I hope it's because of this.

I'm also consistently about 98 with blood sugar so hopefully fixing this will stop that upward trend as next step is prediabetes.

 

I had a full set of scans - basically ultrasound of vital organs and this and that. It sounds like you probably need the same if you are feeling issues with your stomach.

 

To answer another question you had, my insurance covers it, and I can’t see why most wouldn’t given ultimately it’s a pretty cheap thing to take care of. The scans and the DNA test are the most expensive and then the rest is just a semi regular doctors visit.

 

From my understanding even though you are just over 400, we are predisposed to collect more iron in our organs than others, so getting it down quickly - almost to anemic levels-  is important as it helps remove build ups in our tissues that are already there. Getting to budge quickly and in a downward direction is important. 
 

Anyway, all the best with it, I’m treated at Samitivej in Bangkok for what it’s worth and they know what they are doing. 

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4 hours ago, kiwiaussie said:

I had a full set of scans - basically ultrasound of vital organs and this and that. It sounds like you probably need the same if you are feeling issues with your stomach.

 

To answer another question you had, my insurance covers it, and I can’t see why most wouldn’t given ultimately it’s a pretty cheap thing to take care of. The scans and the DNA test are the most expensive and then the rest is just a semi regular doctors visit.

 

From my understanding even though you are just over 400, we are predisposed to collect more iron in our organs than others, so getting it down quickly - almost to anemic levels-  is important as it helps remove build ups in our tissues that are already there. Getting to budge quickly and in a downward direction is important. 
 

Anyway, all the best with it, I’m treated at Samitivej in Bangkok for what it’s worth and they know what they are doing. 

Thats good info. I will get some scan when I reach maintenance. Good to hear that insurance might cover it as well. Thanks

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On 1/17/2020 at 7:06 AM, kiwiaussie said:

 

Anyway, all the best with it, I’m treated at Samitivej in Bangkok for what it’s worth and they know what they are doing. 

 

Could you share the name of the doctor?

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