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.

518 Members
2,097 Posts
0 Online
Gastrointestinal System
/ Hemochromatosis Support Group

New to......

Skinius_Maximus
Skinius_Maximus

Hi everyone


New to this site, group and hemochromotosis.


I am currently in the tail end of my de-ironing, I was just diagnosed last November.  I go in for weekly phlebs when my counts allow it, I can usually do 2 phlebs in a row before I have to take a week off. When I was diagnosed my Ferratin was in the 1600's, my ferratin is currently at 379.


Some of the side affects of my weekly phlebs are extreme fatigue, some aches and pains, depression etc..  I thought I was going nuts but was very relieved to find out that I am not insane and that these symptoms are very common at this stage.  


I will be glad when this stage is over and I am into the maintanence stage, I hate needles!  :D


S


Brinski
Brinski
Hope it is all going well for you. Don't be surprise to find that some of your symptoms don't disappear. If you have time read some of the posts from others. Yes, it is painful, and this lovely iron just goes on giving. Your body, once the iron has done its dirty work, then you are left with what ever it has done to you. Its a disease that just keeps on giving. Aren't we lucky. Silly me thought that once my iron levels were under control that would be the end of it. My levels were 2003 when I found out. Had pain for a very long time but was camouflaged by HRT. Thought the problem was menopause. How easy it is to think this disease is something else. Good luck.
Parrotlet
Parrotlet
Hi, Brinski....That was a very good note and I love your humor. I'm new too but very angry the doctor's found my HH too late to really do anything. It only took 7 0 years (ho hummm) Brinski, I think you're right because at my age, one good sign, I guess, is that I'm still even alive with no treatment at all. 'Course a level of 800 to begin with is amazing that it (so far) hasn't hit any organs so I guess I,m lucky in that way. Parrotlet
Parrotlet
Parrotlet
Hi SM....wow and I thought I was bad with 800!!! Wow again on you having intabations twice in a row (blood draws) That's what they call them here. I'll have to write your word down and use it, huh? Sounds like we're always talking a different language (lol) Parrotlet
Skinius_Maximus
Skinius_Maximus
My levels are fluctuating again, so that means more weekly phlebs. I was so close to hitting the maintenance stage! My ferratin counts from my last phleb jumped 40 points to 273. My doc wants me to get to between 50 and 100 before we switch to maintenance. Now in the middle of all of this, the wife tells me she wants a separation! FML!!!!!!!!
Skinius_Maximus
Skinius_Maximus
Got my newest counts! Ferratin is down to 237 and my hemoglobin is at 114! Yippee!!!!
Cap6
Cap6
Brinski ~ thanks for the laugh. I was feeling quite pissy about this disease and you made me laugh out loud. Yup, this disease keeps on giving. LOL !!!!!
orcasgal
orcasgal
Reading through all of this, I noted a few things that my blood doctor told me and thought I would share. He does not think 1000 is that high. That is what my ferritin level was when diagnosed. And I had monthly draws to get down to below 100 and now maintenance is every 4 months or so. So here's the thing: you might not have organ damage or joint damage that is permanent at the level of 1000. Also, for women, you might not have got to a high/disease level until you stopped menstruating, as that is a blood draw! So don't despair, and make sure you have a hematologist on your team, so you are getting expert advice. And watch for other disorders that might also be causing pain. I had been diagnosed with arthritis (osteoarthritis) in 2011, which totally left me thinking that was the cause of all my pain, only to find out I have hemochromatosis, celiac, and gout! These are the real pain causers in my case, not the osteoarthritis, which most everyone has at some point.
Cap6
Cap6
orcasgal ~ I too have celiac (2010) and osteoarthritis (2017). I had a hysterectomy over 20 years ago so do worry about the organ/joint damage. Also have lost a lot of hair which I hope against hope comes back, but am thinking probably not.