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.
I've read a lot about joint pain and HH. I don't have joint pain the the "typical" areas like the hands but I do badly in my knees. Short of taking aspirin and ibuprofen to help with the pain I'm not sure what else to do. There are times I can hardly stand up. I've always had bad knees from sports and the such (I'm only 35), however the pain didn't start hurting to this point until I started phlebs (specifically when I got below 200 in Ferritin).
Another side note, I had a phleb about three weeks ago where it was determined that my Ferritin had gone up about 40 points. I know it's possible but had not had one go up. Freaked me out a bit. I was so close to being in the range my Dr wanted me to be in. After going every 2 weeks for the past 5 months I was hopeful (I was fortunate to catch this VERY early and my Ferritin only started in the mid 500's). :) I hate needles so this condition/disorder is frustrating for me!
Anyone else experience these type of symptoms or changes? Sorry if I am asking too many weird questions, I am new to this and am trying to learn as much as I can.
Another side note, I had a phleb about three weeks ago where it was determined that my Ferritin had gone up about 40 points. I know it's possible but had not had one go up. Freaked me out a bit. I was so close to being in the range my Dr wanted me to be in. After going every 2 weeks for the past 5 months I was hopeful (I was fortunate to catch this VERY early and my Ferritin only started in the mid 500's). :) I hate needles so this condition/disorder is frustrating for me!
Anyone else experience these type of symptoms or changes? Sorry if I am asking too many weird questions, I am new to this and am trying to learn as much as I can.
I know where you are coming from, I stopped being a blood donor about ten years ago as I ws sure that I could feel the needles in my arm and it started freaking me out to the point that I could feel the sensation if I only thought about giving blood.
Now Ihave to have needles all teh time, sometimes in the early stages I had to have a needle in both arms... one to take the blood out and one for a saline drip, then there ate the frequent blood tests.
However the good point is that I am now starting to feel the effects of the phlebs, the IBS I was diagnosed with has gone, the asthma they thought that I had and then said that was not asthma has just about gone and the joint pains have just this week stared to ease.
My level at diagnosis was 700 which my liver doctor initially said was not very high and he wanted to leave it until it was ove 1000 before doing anything, my heamatologist was appalled at this and said it was high and she started immediate weekly phlebs to reduce it, my TS level was 90% at this point as well.
I saw my liver specialist last week and he has changed his tune and now says that my ferritin level was very very high!! when I was diagnosed, so I think that he has learnt a bit more about HH since I was diagnosed.
I have knee, hip, ankle and finger joint pains, my ankles seem to stiffen or lock up, but they are easing a bit, particularly the hip pain that is much better in the past two weeks so the treatment is working.
I have heard of several people where their ferritin levl has gone up, mine only dropped by 6 after one session when it had been dropping by 90 - 100 between sessions.
Its not an exact science so stick with it its a long term thing.
Take care
Steve
When I was diagnosed in 1998, my knees hurt and my ankles were so stiff that I was shuffling along.
I have very small veins have problems getting the pint of blood removed. So I can sympathize with you. Make sure you drink a lot of fluids before and after phlebbing. Before helps the veins to expand for easier access and after to replace the fluid levels.
What are your most current results?
Doug, thanks for the tip. I'll definitely be checking that out. Today only one knee is hurting/stiff, not sure why, guess I could have twisted it or bumped it on something. I do appreciate you all taking the time to put information out here for all of us newbies. I guess with this condition we all are always learning new things. From the other places I've read about HH it seems that is a common component.