I know of one other member on this board who was doing monthly phlebs

My husband's quality of life was just awful on weekly phlebs. I couldn't bear to see him suffer. So, HE over-ruled his consultant and INSISTED on going to fortnightly. His quality of life greatly improved as a result. If he could go monthly, he would, without question. His levels were VERY high, life-threatening, to begin with, so that really wouldn't have been a clever idea for him at the time. But now he is considering having a month off in August for our daughter's wedding, as he feels he is now in a relatively 'safe' zone to do so. Depending on the outcome of that quality of life wise, he may make the gap between phlebs longer than two weeks because his count should be pretty good by then. The point is, you are all in it for life, anyway. As I said to him, does it make any difference if you go every two weeks for two years, instead of every week for one year, if the quality of life during that year is so much worse and you've got to do it for the rest of your life, anyway? But interestingly, his count is going down hardly any slower doing it every two weeks instead of one! If you feel that your count is non-life-threatening enough, perhaps try the monthly phlebs and see what happens. Your doctor clearly thinks it is. Believe me, too many doctors want you to do it weekly and don't consider quality of life. You have to stand up for your rights with this condition. But if you feel that your level is unsafe and are desperate to get it down, perhaps you should insist on going more often. Remember, it's your LIFE. You are not just some number. Hope this helps.

My doc is wanting me do once a week. After 1st 2 phlebs I felt horrible and quality of life was very sluggish. Based on work schedule I have been getting in every 10 days and feel better. I would like to go every 2 weeks but really know and want to get de-ironed as quick as possible. Sometimes I'm in the mood to go twice a week if I could! I know I have to be aggressive. The phlebs are getting easier to deal with (ie anxiety) and I have a great phlebotomist.

DebWhite: I drink 3-4 protein shakes a day and it makes a world of difference. I also have been exercising 5 times a week. I'm actually already feeling better and gaining muscle...my ferritin levels are very high too.

Good Luck and God Bless

Unlike most of the people on this site I started with partial phlebs and spacing of 3-4 weeks apart. I have felt fine and had no issues at all with the phlebs.

AS DebWhite stated, phlebing less frequently will still get you de-ironed, it will just take longer. From my perspective there is a potential benefit of smaller changes so your body can adapt more easily as long as the longer duration does not cause any damage from the elevated iron levels.

ShreddeW mentioned protein shakes, I take protein powder with fresh fruit and raw oatmel in a blender every morning and it certainly has increased my energy level. I understand that protein helps generate albumin which is required for new blood cell production.

@ Michael...how high were your numbers when you started?

I started in March 2010 with ferritin at 1250 and % sat at 55-60.

After the equivalent of 30 full phlebotamies, I am currently at around 500 ferritin and % sat 25-30%.

Did your ferritin drop first? I took one trip to the blood bank and my ferritin dropped about 10% and my % sat remained the same. My ferritin isn't too high but my % sat is.

In general my ferritin did drop first, which I think is normal.

Most of the info I have seen online has indicated that Ferritin drops during the entire phlebotamy process and toward the end the iron saturation drops off. I think I am a little bit unusual as my iron saturation is normal and my ferritin is still elevated ( the info I have seen is that the iron sat starts to drop when ferritin gets into the 100-200 range). My personal hope is that my diet of iron chelating fruits and raw oatmeal diet is helping, but that is speculation on my part.

You should see your hemoglobin and hematocrit drop as you become totally de-ironed. My HGb has stayed pretty stable in the 12.5 - 13.5 range throughout my treatment.

And what is strange about that is my ferritin is now at 209 and my sat % is at 90. I am flip flopped. High sat, not too bad on ferritin. My iron on went down from 266 to 257.

Oh, and before I donated my hemoglobin was at 15.1 and a week later it was at 13.2 and my hemocratic level went from 43.8 to 39.7. I seemed to have dropped a lot in those areas. Perhaps that is why my doc doesn't want to phleb more than once per month. I get it.

My advice from my own research that i have done would be:

1. Continue your phlebotamies, I think everyone would be more helthy at a ferritin of 50 anyway.

2. fast before your blood test as some research indicates taht iron and iron sturation levels can vary throughout the day.

3. Find a good hemotologist that you trust . I have also heard that some people with HH tend to stay high on iron sturation.

4. Add some black currant juice or fresh blueberries or blackberries to your diet to give you an antioxidant boost while your iron saturation stays elevated.

Thank you for the advice. I love blueberries and add them to my cereal almost every morning. Kashi 7 Whole Grains only has 2% iron. Is Black Currant juice high in Vitamin C?

I consume about 8 OZ of Knudsen's "just black current Juice". That amount should give me about 180 mg of vitamin C. Vitamin C can actually work as both an antioxidant as well as a pro-oxidant ( bad in our case fi we have any unbound iron), but I think this amount should be well tolerated especially away from other meals and consumed in a whole foods product rather than a concentrated supplement.

Thanks for all of you input. I appreciate it.