Chronic Pain Support Group
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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, 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 that. But still left me with the fatigue, dizziness and brain fog. General cognitive thinking was basically not there. 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. Hardly any to No red meat or anything that is high in iron. So it was awesome not to have to have a phlebotomy day very 2-3 months. This year I found that my iron is back up. 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 are no help. I’m a conundrum.
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Hi All.... It's great to see all of the new people joining the site... I'm loving it!!...smileI'm not sure if people are aware that if you don't have Bipolar Disorder but have a loved one who has the disorder we do have a board for people to go to in order to share their experiences and seek friendship, support or adviseIt's the Friends and Family of Bipolar Board.... I hope you'll take a...
Having the blood disorder can affect many parts of your blood chemistry so just advising to check everything that a normal person would look at if they had a problem, is not going to work the same or have the same results.
Just in case you still are stopping by here: Your comment copied below confuses me a little. My doctors (Blood & GI) have tested those specific items and mine are all normal, only my ferritin is/was out of range, I think this combination of ferritin high, all other iron rerated tests normal is what threw my GI doctor based on his comments. In any case, my ferritin level is what is driving my blood donations now.
This hemochromatosis problem is very confusing especially for someone like me just joining the problem. Also, I have found that doctors knowledge of this problem is lacking (PCP doctors typically don't test for it for one). Can you believe that a cardiologist that had been in practice for over 40 years asked ME what a high ferritin level meant. I did not know when he asked, but I soon found out by a little digging (and it did not take much digging) that high ferritin levels are very bad for the heart. You would think that a cardiologist would know........
Quoting:
"your ferritin level is not the only level that is important for your doctors to keep an eye on. Iron Saturation and binding capacity, as well as the iron, are important. Last test, my ferritin level was 46,"
At first I was only told about the ferritin levels also. No one told me there were other iron components they tested for. (20 years ago, great now I feel old
At first I was only told about the ferritin levels also. No one told me there were other iron components they tested for. (20 years ago, great now I feel old
Anyway, this new hematologist was very concerned that my saturation levels (also called transferrin) were that high. They also check that in combo with your iron binding capacity and iron serum. All 4 play apart in this. It would be better if you could look this up yourself. For me it’s kinda complicated and I don’t know how to saw it “non technical “. Sorry.
Yea, it’s amazing how many doctors don’t know about this. Especially now a days, where the information is so readily available. I mean we can look it up.
You’ll do fine with your hemochromatosis so long as you keep your iron levels low. 50 or under. We have to remember with this disease, our bodies want to keep the iron. We want them to have as little iron as possible so they don’t keep storing it away in places we don’t want it to be stored.
Best of luck to you, and thanks for your comments,
I really do not understand how all my Iron related tests are well within the normal ranges, but I have a high ferritin level. As I said, these conflicting results really threw my GI doctor, and my PCP had no clue that checking for hemochromatosis was even important. I have read multiple books, written by cardiologists, where checking ferritin level in their patients is at the top of their testing list. My PCP said that he only had one hemochromatosis patient, and smarty pantys me replied; "that you know of, you never test for it." I think that he was stunned by my response. I bet that he is testing for it now!).
You said keep your iron levels below "50". Did you mean ferritin level below 50? My actual iron measurement was at 104 about 3 weeks ago, which is right in the middle of the "normal" range. My blood doctor wants my ferritin level 50 or below, he did not mention anything about my "iron level". In fact he wanted me to cutback to one blood drain every 4 weeks to make sure that I do not become anemic. He said (and I thought) that I do not need anymore medical problems.
Yes, the complete iron study has been done at three times that I can remember off hand by two different labs and ordered by two different doctors. Same results each time; all normal except for high ferritin.
My blood levels seem to be confusing my docs. Cuz my endocrinologist called me today, again asking me if I was feeling ok, saying that he was concerned that my sodium levels and my TSH (thyroid) were high. He did seem a bit surprised when I told him I was feeling fine. Said the high level of sodium would indicate dehydration. I told him that during the radiation treatments I had my phone set my phone to go off every 3hrs to remind me to drink water. And that it’s srill set. I’m hydrating. Will piggy back blood labs again with hematologist. Ugh.
And yes I meant ferritin levels 50 and under.