Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

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Feeling weak. Anyone uses any vitamin supplement ?

Macas
Macas

Hi. I was diagnosed with HH in December 2017, and have undergone two phlebotomies until know (early December 2017, and early January 2018). I have also changed my diet habits drastically, almost suppressing read meat, and other foods rich in iron. I do not know if because of the diet change and /or venesections, but about a week ago I began feeling very weak and tired. 


is this normal during the de ironing process to feel this way ?. Has anyone used vitamin supplements of any kind to feel better ?


Thanks for sharing any experience or guidance !!


Regards.



Mario


Brinski
Brinski
It is very normal to be extremely tired. Weak also because of the amount of blood you are having taken. It does get better. You will have times when your Iron level will go up instead of down. This can happen when you are unwell.. You don't say what your Iron levels are. Don't be surprised by joint pain in most parts of your body. Good luck
Pudding80
Pudding80
Hi Macas,

I use a vitamin supplement very erratically because I keep forgetting to take it.

For people with HH it is important that there is no iron in the supplement - and most of them do have iron.

I found one for older women that does not have iron and I take that when I remember.
shirl1935
shirl1935
hi macas

I just started treatment an with the 3 draws I have felt terrible, headache low bp and high pulse,and very tired and weak,i guess this is what most feel after wards, I sure hope it gets better how ever initial levels of 773 dropped to 432.

I plan on viviting the American hemochromatosis center in lake mary fla ,as soon as I feel up to the drive!
Macas
Macas
The fatigue issue is weird for me. I have gone through 3 phlebotomies over a two and a half month period. After a phlebotomy I feel very weak for two or three days, then get better, but again feel terrible for some days around the day ten and onwards, very fatigued and sleepy. Anyone experienced that ? My ferritin level started at 1,200 and went down to 700 after the second venesection.
Cap6
Cap6
I have done 5 months of blood letting. This last month my levels were down so I was given a month off. I've been fine until this past week when I am totally dragging. So tired! Have an apt with the doctor and for a blood let on Friday and am anxious to see where my levels are. I also do not want to go back to weekly pints. For me too, it is 2 or 3 days to recover, feel good a couple and then a couple of days spent dreading the next blood let. ugh!
brucekingfield
brucekingfield
Cutting simple carbs made a world of difference for me.
shirl1935
shirl1935
saw the dr after the last post, I was feeling soo awful I wanted to just sit and cry,but he refused to take any more blood, I have cll chronic lymphoblastic leukemia, and I just wasn't replacing the blood fast enough,now what? I'm left in the dark about what to do, my blood pressure is low and my heart is beating too fast, and 2 weeks later I still feel weak and tired. does anyone else have this problem? any problems not sleeping, and night mares?