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, new here. Was referred over from the chronic pain group. Didn’t know this one was here. So I did a copy paste of my post over there.
I have hemochromatosis, a genetic iron overload disease. The only way to lower my iron levels is via a phlebotomy. Well, I don’t handle them well. For about 5 days after, I’m extremely fatigued, (gravity working over time) slight to moderate dizziness and I have serious brain fog. Back when I first started having to do this, it was more than just brain fog. There were times I couldn’t remember how to do things, like dial a phone, drive my “standard” truck. Taking less blood helped the forgetting how to do things. But still left me with the fatigue, dizziness and brain fog. General cognitive thinking was basically not there. I was unable to work. I have yet to find a doctor that has any clue as to why this happens to me. I did great for about 10 years at keeping my iron levels down all by myself.( Not 100% sure how I managed,. I’ll take it. ) Without having blood drawn. No red meat or anything that is high in iron. No vitamin C, So it was awesome not to have to have a phlebotomy every 2-3 months. This year I found that my iron is back up. Well it’s my iron saturation level that’s really high. So I agreed to having a phlebotomy. I figured it’s been 10 years, maybe I’ll be ok this time. New doc even tried something new. IV fluids before, “during and after.” Slow blood draw, and only half the normal amount. To my dismay, my body and mind reacted the same as it always did. I can not function during this time. It’s not good health wise for my iron levels to be high, but it’s not good personally for me to have my brain and body check out for 5 days, every time I do this.
Is there anyone else here, gone through anything like this, or know someone that has? I can’t be the only one, this is so frustrating. And the docs in my area have never seen or heard of anyone that has had this type of reaction. I’m a conundrum.
And yes, for those of you that had your levels 1000 and up, aches can be expected. My brother went through a lot of that. He found out that the iron had already started damaging his body in different areas. Cartilage is one of those areas. Anywhere the blood goes, the iron goes.
Crossing my fingers
I, too, had a very difficult time with the blood letting. Chest pains, shortness of breath, fatigue. Couldn't open the garage door without panting for breath, passed out & peed my pants (lovely!!!) and then threw up on my phlebotomist. . ha (I have to laugh or I might cry). I also have fluids before and after a procedure., We are down to one bloodletting of 1/2 pint a month. I have refused to do the full 1 pint as have found I do "better" with only the half pint. That said, some draws are fine and others aren't. No absolutes on this disease.
What I don't understand is the pain in my joints, especially the feet, knees and hips. It hurts so damn bad that some days I want to just sit and do nothing. The pain has become worse as the treatment continue. Why???
Sorry to have no answers, just total sympathy for what you are going through.
I was the person that referred the OP over here and we have exchanged multiple posts, so I will just comment on your post.
Joint pain is the number 1 or maybe #2 symptom of iron overload or Hemochromatosis. Fatigue is the other, and there are several other symptoms that all can mimic other problems such as arthritis in the case of joint pain. Multiple, seemingly unrelated symptoms, is what doctors will either focus in on as iron overload or send them on a wild goose chase, usually goose chasing.
If I may ask, what is your ferritin level? I have seen some mention as high as 2,000, maybe higher. Mine averaged around 600, but hit 1,000 one time. 1,000 and above is considered critical.
I have been lucky so far with my blood draining; no side effects from it. I had 5 in about 4 weeks, and that was enough to lower my ferritin level to 250, so my doctor has cut my trips to the blood center to once every 4 weeks. His ferritin goal for me is 50.
I have no idea why some people have terrible side effects from what is basically a blood donation. I had given blood only once in my 66 years until February so I had no idea what to expect. I do drink a lot of water before and after, but really not much more than usual for me. I also eat a bigger meal than my typical just before going to the blood center. Nothing else.
I hope that both of you can get some helpful responses from this Board.
My brothers ferritin was 1400 when he first found out, I know he had a lot of aches and pains, but I don’t know when they started. before the blood letting, during, or after them. I can ask him.
I’m one of 5 so after he was diagnosed, we all had to get tested. I have the benefit of being a woman, so my level only got to 360. (That was 20 years ago) I have to be more careful now.
I just got my new results. Ferritin down from 50 to 29. But saturation went up from 76% to 85% . Have your doctors talked to you about the other iron levels that are checked along with the ferritin?
They didn’t tell my brother or sptrout.
Would be interesting to see if they told you a out them.
I hope things get better for you.
Also said our metabolism and food diet has a big effect on your iron absorption. No body told me all this. Though he went to Boston. Got the liver biopsy and the works done there.
I hope that helps.
To answer the first, sptrout, when I was diagnosed in September 2017 I was at 1,250. The joint pains didn't really start until maybe December or January. Atr first I just thought it was the extreme cold weather, we are in Central Oregon, but.... guess not. (sometimes the months all run into a blur!) My last blood test was just last month, March, and I was down to 144. My last bloodletting was 1/2 pint 2 weeks ago. I have another scheduled for the end of this month, April.
Honestly, the past couple of months I have been in agony with the joint pains. I am a pretty active 67 yr old woman. I mean, this time last spring we were putting up 275 feet of cedar fencing. My joints were pretty sore back then and I was good for about a half day work but nothing like now. I have trouble getting up into our truck bed now. And my fav activity is once a month we go dancing at a local bar (ha ha) but I have opted out for the last couple months as was too sore.
The last 2 days I have been taking Advil which has really helped but we know that is not a long term fix.
Given all of your responses I think that I will start keeping a "pain diary" so that I have a clue as to whether this gets worse before or after a bloodleting. I kept a food diary when I was first diagnosed with celiac way back when so seems like another diary is in order.
Hate to sound like a pity party - but thank you! thank you! for all of your responses. If we didn't have this forum where would we go for info and to compare aches & pains - and know that we ARE pretty normal after all!!!