I'm starting on weekly plebs after my iron randomly went way back up. It's totally ok to do it so often, it just sucks! I find I'm super tired and thirsty after and my nurse always gives me a saline drip to rehydrate me after giving blood. Maybe you could suggest it? I think it's just a matter of getting as much rest, nutrition and fluids as possible.... apparently your body can adjust over time to the weekly blood loss!

Wow, unbelievable that it can do that. I received a saline drip at my last one and was really thankful.
Knowing so many do it weekly is the only thing that keeps me from freaking out haha

IronManHH.

Not everyone can tolerate once-weekly venesections / phlebotomies but if you can then your serum ferritin and transferrin saturation levels will reduce more quickly.

Always drink plenty of water the day before and on the day of treatment - much more than you would normally drink and no tea or coffee as caffeine is a diuretic.

It is best to have treatment in the afternoon. Have a light lunch first - don't have treatment while you are hungry.

The next day I usually drink and eat a bit more - I fancy toast with something nice in between meals which I don't normally do. I go to bed earlier afterwards and get up later the next day.

Just do whatever makes you feel better.

Christine

Weekly was what I did for quite a while, about a year because my level was so high. I was so tired, though as time went e, I was less tired for less time. I did eat more, but switched to following a diabetic diet, which helped. Sugar seemed to make me hungry and also more fatigued.

You need to tell your Doctor how you are feeling. My Iron level was 2003 when started venesections. It was discussed to do them weekly but then decided for that very reason you are having that it may tire you and make you anaemic. My blood was taken every fortnight. One of the reasons you are tired is because of the Iron overload. They never took my blood if I was unwell. It takes time and patience to get to a normal level. As your levels start to come down, symptoms get better. I wont tell you they go away, but better.

hi all, havnt been on the site since last year, was diagnosed in dec 2016 with reading of 1600 and started venesection. I was terrified and anxious and nervous and scared and cold and was fighting it every time and it hurt and it was traumatic....well 1 year on and im now able to relax my right arm completely, to have to needle...although my left leg now does the shaking and bangs the bed, me and the nurses got a routine of one will talk to me ask questions and other will take blood, its like my body thinks independently, and knows whats about to happen, but even after a year its still not "nothing" to have the needle, but 1000% better, half my anxiety was because I knew it had to be done...it took a good 5-6 months until my aches and tiredness lessend, and its really the only problem I have, is with symptoms, debilitating fatigue and hepatic oxidative stress, from excess iron... I really wanted to understand why my ferritin has jumped up too 500 it had gotten as low as 297 so I was bit shocked to know it was possible for it to randomly jump, did everyone else have severe aches...its why I initially wanted testing for it after researching symptoms...hope everyone has a nice weekend..thanks

hi all
no one told me of the debilitating feelings that come after a blood draw,i thought I was dying! thank goodness I found this group, as I have been flailing around trying to get answers, the nurse gave me the saline drip the first time, the second time around ,they didn't! wow,that was a lot worse! so now I ask for it every time, and it helps, I am 82 with other issues so I don't know if that causes more problems, but gotta do watcha gotta do! good luck all

Wow.. I could barely put up with bi-monthly as it was giving me heart irregularities. Otherwise I got used to the needle. I hate needles but what's the choice? Plus it doesn't hurt that bad, particularly with some phlebotomists: with some you hardly feel anything!

Hey there! I hope you are starting to feel better. I was going weekly last month and my hemoglobin dropped and I was feeling very poor. It was definitely affecting my activities of daily living. I spoke to my nurse at the phlebotomy and we decided to go back to once every two weeks. My hemoglobin is now normal and my iron is dropping steadily so in the end I was better off, even though I was initially worried that my iron would go down much more slowly if I went to bi-weekly. Sending you good vibes! I hope your journey goes well and your phleb nurses are nice to your arms!

I just flat out told my doctor that I can't handle weekly phlebs, the side affects are just too much. Like some of you, I was having chest pains, sleeping all the time, low blood pressure, vomit and throw up after the procedure. Too much. Doctor agreed and we are doing 1/2 pint every other week. Half a bag of saline before the phleb and half a bag after really helps.

I am very relieved to see that I am not the only one having fatigue issues with my weekly phlebotomy....no one I know has gone thru this and I was starting to feel pretty depressed & crazy! My doc actually told me last week that since my hemoglobin levels aren't falling like she thinks they should that I am needing to be switched to having 2 units taken each week. Has anyone heard of this or had it done?? I am incredibly nervous about this especially since I am having such a hard time with 1 now......

If you are a 200 pound male you might make it through 2 pints of blood a week. I have read that men are better able to give more blood weekly than women but.... !!! Ugg. That seems like a little much. I am a smaller build woman and was doing 1 pint a week which was too much, too many side affects. We went to 1/2 every other week. Just can't do it.

I was just diagnosed and had my first phlebotomy 3/23/18 my ferritin was 1864 and the following day I really felt bad, tired and very weak. is this common? I have 2 copies of c282y. I am really nervous thinking about having this done weekly, was told if I did it one time a week it would take two years advised to do it 2 times a week but did not want to do it.

My level was 2003. I only had venesections every fortnight. Yes it took 18 months to get to normal levels. But they would not take my blood if I was unwell, or if my blood pressure was high or my pulse was very high once. My doctor decided that weekly was too much. Yes you do get tired but that is also a symptom of Hemochromatosis when your levels are high. If it is too much you need to say so. I know the anxiousness when your blood is not taken because all you want is to have the iron level down. So that your body is not under attack.

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