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.

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fatigue

langlois
langlois
I have been getting phlebs for a few months; after each phelb I feel more and more fatigued: doing anything exhausts me. The hem wanted every week, we compromised to every two weeks and I am dragging most of the time. Any tips? I will see the hem next week and maybe get some help from him. I eat and drink before and after the phleb and have a healthy diet. I can't believe I'll feel that way till I am done. My ferretin is 500, I hope to be done by Summer. It is very good and comforting to be able to have this large group of nice folks on my side!
Thanks, Langlois
deleted_user
deleted_user
landlois,I too suffer from fatigue and other weird feelings from phlebs. my suggestion would be to listen to your body....this isn't a sprint...it's a marathon! remember...you are the one that has to deal with the physical effects from the phlebs...not your dr. :)so, find your comfort zone...it doesn't make sense to me for us to deplete our systems, because the dr.says it's gotta be that way!we all have lives to lead! my dr. moved me to once a month..after weekly phlebs prove to be to much for me! it has been a better fit for me. find what fits you...Good Luck!
deleted_user
deleted_user
I guess I am opposite my doc had me every two weeks and I begged for every week and we settled at every 10 days which worked great for me ,like BDTD says listen to your body ,I was watching the calender waiting for every two weeks and thats why I spoke up because my body felt good after a phelb .
deleted_user
deleted_user
My last phelbotomy did me in. I still haven't recovered. It was my 7th. I am more fatigued than normal. And to top it all off, my blood pressure has dropped. I have suffered for years with hypertension. Yesterday my bp was 136/63 which is very low for me.
GidgetD
GidgetD
Langlois, Be patient your ferritin is still high so it will take time. It will take a lot longer if you go only once a month, I have to go every three weeks just for maintenence so I worry whether your ferritin is going to drop much in a month but we are all so different. I phlebbed weekly for a year and I call it my year from hell but the results were absolutely amazing. Keep the faith it will get better.
bronxpreston
bronxpreston
langlois
Can you tell us the CBC results? What's your hemoglobin and hematocrit?
I have a CBC (complete blood count) and iron levels done before I am phlebbed. Some doctors have the CBC done the day of the phlebotomy to make sure the patient isn't iron anemic.
Since I also have hypothyroidism, I like to mention that when people say they are still fatigued. That can really impact on how fatigued you are.
langlois
langlois
I had some blood work done today and will post it when I get the results. I feel out of breath or as if something is fluttering in chest. Had to give up gym and most everything.
Langlois
deleted_user
deleted_user
Hi Langlois, to be honest I'd go as frequently as you can tolerate. Weekly is better but I couldn't handle that either, so did twice a month until de-ironed. As Gidget says, you ferritin is still quite high and you need to get rid of that excess iron. Remember it's accumulating around vital organs (liver, heart). I suffer crippling fatigue, even after de-ironing, but I have many other health issues as well. As soon as your ferritin gets down to a reasonable lever, you'll feel much less fatigued, I'm sure.
langlois
langlois
My last phleb was March 3rd, here are results of lab work done on the 10th: WBC 6.0, RBC 3.83, HGB 12.9, HCT 37.6. Ferritin down to 410. I started at 750 in December. Pretty good progress - I am still exhausted, though... I see the Hem Wednesday.
Langlois