Waiting for first withdrawal
Posted , 5 users are following.
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.
1 like, 15 replies
maureen99963 gina38206
Posted
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.
gina38206 maureen99963
Posted
Gina
philx gina38206
Posted
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
gina38206 philx
Posted
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
philx gina38206
Posted
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)
gina38206 philx
Posted
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
gina38206
Posted
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
philx gina38206
Posted
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
gina38206 philx
Posted
Gina
irene50060 gina38206
Posted
philx irene50060
Posted
A woman of few words?????
irene50060 philx
Posted
maureen99963 gina38206
Posted
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."
gina38206 maureen99963
Posted
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
maureen99963 gina38206
Posted