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.
Hi all
Its been some time since I posted anything on teh site.
I had heard that it can take up to 2 years after being de-ironed for the full benefits to be felt.
My hip pains initially went away after I started with the phlebotomies, only to return with a vengance. However in the last few weeks I think that the pain is starting to get better at least during the day.
I still get woken up at night with toothache like pain in my hip and cannot move to a comfortable position.
My walking during the day seems to be a bit better, but I still cant walk far without feeling really tired.
I also find getting in and out of cars to be difficult, must be due to the stiffness in my hips I guess.
However I saw my specialist 2 weeks ago, and she had the results of my Hip, Back and pelvis MRI scans (I spent about an hour in the scanner!!) and she said that I have some wear and tear but not enough to need a hip replacement thank goodness. She said that I should speak to my GP about the pains and how to manage it so I have to arrange to see my GP.
The pains in my finger joints seem to have come back a bit more in the last few weeks, my specialist said that I should give blood again and then about 4 times a year so maybe I need a Pleb and it might reduce the finger joint pains.
I still feel very fatigued and will speak to my doctor about that as well to.
I am very stiff down my left side and struggle to put socks etc on my left foot.
Take care
Steve
Its been some time since I posted anything on teh site.
I had heard that it can take up to 2 years after being de-ironed for the full benefits to be felt.
My hip pains initially went away after I started with the phlebotomies, only to return with a vengance. However in the last few weeks I think that the pain is starting to get better at least during the day.
I still get woken up at night with toothache like pain in my hip and cannot move to a comfortable position.
My walking during the day seems to be a bit better, but I still cant walk far without feeling really tired.
I also find getting in and out of cars to be difficult, must be due to the stiffness in my hips I guess.
However I saw my specialist 2 weeks ago, and she had the results of my Hip, Back and pelvis MRI scans (I spent about an hour in the scanner!!) and she said that I have some wear and tear but not enough to need a hip replacement thank goodness. She said that I should speak to my GP about the pains and how to manage it so I have to arrange to see my GP.
The pains in my finger joints seem to have come back a bit more in the last few weeks, my specialist said that I should give blood again and then about 4 times a year so maybe I need a Pleb and it might reduce the finger joint pains.
I still feel very fatigued and will speak to my doctor about that as well to.
I am very stiff down my left side and struggle to put socks etc on my left foot.
Take care
Steve
I haven't posted for a while about my HH either, but saw yours and wanted to say hi!
It's been a month since you posted this, so I was wondering how you're getting on?
I've been having venesections for about 15 months now. The weekly ones in the beginning were a killer in terms of the fatigue! Over the last 9 months or so, I've been on 3 monthly venesections, and that will continue now to keep my iron levels down.
I still struggle with the tiredness, some days are worse than others (today being one of them!). It feels like I haven't slept all night. My aches and pains have improved, but if I do anything strenuous, I start to ache, especially my back and shoulders.
My liver function has also improved, although my enzymes are still above the normal range and I have enlarged red blood cells - I wonder if this is what's causing the tiredness.
Did your liver function tests come back ok?
I hope you were able to get somewhere with your GP for managing your hip pain and things are improving.
All the best,
Jen
Nice to hear from you again, I have to make an appointment to see my doc as I now have the letter that I was waiting for from the specialist regarding my scans, so I will let you know how I get on.
The hip pains seem to be a bit better, although I still have problems walking too far. The fatigue does not seem to be getting any better, but I hope that that may improve as time goes on.
Last night I was woken by pains in my index finger, I have never had that wake me before, the pins in my fingers are normally fleeting like being stabbed but they have always been in the daytime before, hopefully that's a sign of something moving and getting better... well I can hope!
I too get back ache in my back and shoulders.
I was told that my liver function is normal but that I have a bit of a fatty liver and that I can cure that by cutting back on fatty foods, however I don't like fat in my food people have told me I am like a surgeon removing fat from any meat that I eat!!, and we don't really eat much meat these days, and I have skimmed milk in my porridge so I will have to examine my diet.
I will let you know how I get on with the doctor, as I want to be walking better before I go on holiday in April.
What are your iron levels now, my last test mine was 35, so the specialist said that I have to give blood about 4 times a year to keep it that way, but they will keep monitoring me.
Take care
Steve
Have you created any more photos recently I just looked at them again, you are so talented you should be selling them.
I find them so relaxing, I wish that I could print them out and hang them.
Steve