Waiting for first withdrawal

Allergies, blood and immune system
1

Just curious on how fast symptoms go? My only symptom is tirdness but it's really interfering with life. I have 3 young kids and am worn out. Levels are only at 265 so I can't imagine how someone with levels in the 1000s must feel. Unfortunately I'm on waiting list with my hospital.

2

The only symptoms that improves for me was my liver enzymes normalized for the first time in 20 years and my skin no longer was 'tan' year-round without sun exposure.  My joint pain and energy levels have not been affected by all the phlebotomies I have had over the last three years.  

3

Hi Gina

Personally I actually feel worse since starting phlebotomy,

I'm tired all the time, either lightheaded of really dizzy,

I am 66 but very active, I was going to the gym 4 times a week but

I have had to stop going not having the energy, I am going for my 6th

Phlebotomy tomorrow, then seeing the hemotologist 19.8.16 hopefully

I will have dropped by around 500,with just over 500 more to get to a

reasonable level, I am hoping I will be able to have fortnightly as opposed

To weekly, but it will take as long as it takes,it has to be done.

I hope you start your treatment soon and feel better

Cheers Philx

4

Thanks for your reply Phil. I'm hoping because my levels aren't too high that it may improve my tiredness. Nervous at the thought of it as I've never even donated blood so not sure what to expect but hoping to get called soon. And I'm the same...haven't been able to exercise just so tired.last thing I want to do is go for run. But weight gain is driving me mad. Amazing how much it affects things . Thanks again Phil.

Gina

5

Thanks for your reply Maureen. Really hoping it helps with tiredness. Am going part time in work soon so hopefully that will help. How often do u have phlebotomies now?

Gina

6

Hi Gina

Please once you get your appointment for your first venesection

Don't worry you have had blood tests done before it's not much difference

To that,they find a suitable vein a sharp scratch, then you just lie

There for how ever long it takes,the more you worry it will push your

Blood pressure up ,and this may mean you have to have a needle in

The other arm to give you fluids,it was Terry's first time last week and

He was exactly like you very apprehensive, I told him to take some relaxing

Music with him,he cannot wait to go back for his next one.

You have to focus on the fact this is for the greater good,to catch it

Before it starts to damage organs ,when treatment would become more

Severe,so I would rather put up with less invasive treatment.

Best of luck

Cheers Philx(just preparing for number 6 at 10.30 am)

7

Thanks Phil

your right and it has to be done so no point worrying. I was reading terrys post to and its good to hear. Best of luck Phil .

Gina

8

H

9

Hi irene

A woman of few words?????

10

Hi 

11

Hi Phil

Just a quick question you may know answer. Because I have haemocromatosis does that mean 1 of my parents have it or that they are carriers? My dad has been tested and he is a carrier but my man has yet to go they are both in there 60s. Thanks Phil

Ginax

12

Hi Gina

The only way to find out is to have a genetic test,I am awaiting the

Results of my genetic test???but the are 99.9% certain mine is inherited

From either my parents (both now dead) or futher back in my family

My 2 sisters have had ferritin tests but they are the opposite anaemic

My other sister has not been tested.

Get this test done(but I think I read somewhere one off your tests have to be quite high before they will do the test)

,and advise immediate family to have a ferritin test

Of mike might be able to help more.or phone the hemochromatosis society.

Cheers philx

13

My father has he same H63d gene and our daughter inherited two H6ed genes from my husband and me.   Both my paternal grandparents had both and I wonder if my great grandfather died of cardiomyopathy as a result. My huband's father was likely a carrier and his g-grandpa was likely a carrier.  All of them were of Irish ancestry and Hemochromatosis is called 'the Celtic Curse."

 

14

Hi Maureen

Yes my dad's result came back fine. He is carrier but doesn't have it. So I'm wondering is that where I got it from or should I make my mam get tested anyway just incase. we're all 100% iriah also 😃thanks for your reply

Gina

15

Thanks Phil. Appreciate the info.

Gina

16

If you know you have two genes you got one from your dad and one from your mom.