HI MEGAN.. HOW OFTEN ARE YOU GETTING PHLEBS? I THINK IT IS "STANDARD" PRACTICE NOT TO BLEED YOU WHEN YOUR HGB IS THAT LOW. I AM NOT REAL SURE OF THE ADDING IRON TO ONE WITH HH. MORE LIKE STOP THE PHLEBS FOR A BIT.. I THINK THERE WAS SOME ONE HERE THAT BECAME ANEMIC. JUST CAN'T REMEMBER.. MY LABS RUN IN THE LOW RANGE TOO.. I HAVE HAD 25 PHLEBS NOW. I HOPE TO GET ON A MAINT. PHLEB SOON..
DON'T GET TOO WORRIED TOO SOON NOW... DO YOU GET COPIES OF YOUR LABS FOR YOUR RECORDS?? YOU SHOULD ... HELPS KEEP TRACK,, I DON'T TRUST DOCS TOO MUCH,, THEY ARE TOO BUSY..
IS YOUR DOC WELL VERSED IN HH?? KEEP A STIFF UPPER AND LOWER LIP. HOW LONG TILL YOUR NEST PHLEB??
IS YOUR FERRITIN REAL HIGH?
WELL I RECKON I'LL GET AND HOPE YOU DON'T WORRY TOO MUCH AT THIS POINT.... TAKE CARE DC

Megan,

We are all different and some of us take longer to recover from Plebs.

Here is my understanding of the iron process in the blood. When you have a phleb, the body produces new red blood cells. The red blood cells need iron, so basically the ferritin will release the iron to the new red blood cells. Noramlly a person with HH can be bled once or twice a week and will not have any issues with becoming anemic.

Some of us, myself included, take longer for the body to release the stored iron and produce hemoglobin. I have been being phleb. once every two weeks for over a year and at this rate my hemoglobin stays at around 13.7. I currently convinced my hemotologist to let me do a phleb every week and like in the past my hemoglobin starts to drop off. It is currently at 13.1 and last time I tried this it continued to drop to around 12.0 when my Hemo backed me off to once every two weeks. One protocol I read on the web instructed the doctors to maintain phlebotamies to maintain a HG of 12.5-13.5 ( for males and something below that for females).

If your ferritin is still elevated, you will be phelb'd when your hemoglobin is high enough to not make you anemic after the phleb. When your ferritin is finally depleted your hemoglobin will take longer to recover and the doctor will adjust your phleb frequency to maintain a safe ferritin level.

My MCV has stayed around 99-100. Supposedly the MCV will decrease as your body becomes deironed. Some studies say that you can use the MCV number to predict your phleb frequency and verify that number with a ferritin test every now and then.

I understand that the MCH number will stay on the high end of the range when you are being phleb'd frequently.

Hopefully your doctor would not give you iron supplementation as if you have excess iron in your body it will release it over time.

Hope this helps

HEY MIKE THANKS. I KNEW SOME ONE KNEW MORE THAN THIS OLD MONKEY... AND MEGAN.... WHAT MIKE SAID!!! AINT THIS A GREAT GROUP??? IT SURE IS NICE HAVIN THE INSIDE SKINNY ON ALL THIS... THANKS AGAIN MIKE (OR MICHAEL).. DC

I am getting phlebs once every 2 weeks. My ferritin was 424 a couple weeks before starting the phlebs. I am homozygous for c282y.

I had read some 'horror' stories about some doctors (I'd like to think mine wouldn't do that, but I barely know him though he has a good reputation - he is a hematologist but I notice mostly has cancer patients but he was very proactive about the hemochromatosis)

I do get copies and keep them of my labs. I was a bit concerned about the trend downward of those labs over 3 phlebs.

I talked to my GP (who is a naturopathic doctor) and she explained to me that the phlebs are meant to trigger a mild anemia to force the body to make new hematocrit and grab onto the iron to clean it out of the organs. I don't think I really understood quite how it worked until she told me that today.

She said that I probably won't 'even out' either like I'm hoping - but I don't get that really - if we're just trying to get my body to make more hematocrit, perhaps it will start making it faster?? she said 'no' so I totally am confused about that.

She said That my ferritin will need to get re-tested and it could be low enough to go on maintenance (this fast??? really??).

She also said that if my ferritin is still high and I'm anemic, it could be that we back off and give me more time between phlebs. Or that something else could be causing the high ferritin.

thanks

It sure does make things less stressful to come here and learn from you all...I've been a bit of a worry wart most of my life - but this has pushed me to start learning and going to regular meditation practice which is helping ALOT with that...

i really appreciate you all sharing your experiences and positive thoughts!
Meg

Hi Megan, As some have said we are all different, I phlebbed 52 weeks straight and my hematocrit got down to 30 and as long as it stayed at 30 I phlebbed. I also had test done every time I phlebbed and they always did ferritin, iron and Hematocrit. The weekly numbers were very helpful to me when it came to get on maintenance. Good luck to ya, and don't sweat it to much. I think the stress can be worse than the disease is.

Thanks, I think it helped when my Doctor called me yesterday and explained that putting me in a mildly anemic state was the purpose of the phlebs.

She also said it takes a few to get me to that point at which point my body should kick in and start making the hematocrit.

I kind of get it now. I promise not to be stressed about it. I was just completely uninformed yesterday morning, before my doctor called me back and explained it.

thanks everyone! I'm on the right track now.

@megan,
Yes, we are all different:)
I have been phleb'ing twice p/week since last Sept, Yesterday was #77. My hemotologist will allow me to phleb if my HGB doesn't drop below 10.0 Last week, my HGB was 10.4 and HCT was 32.3 (MCV was 105.5 and the MCH was 33.9). The doc stopped in my room yesterday & said if I drop to 10.0 we will do once p/week to allow for some recovery time. So far, I've kept my HGB above 10.0:)

Good Luck
zzzzzz

@michael, thanks for your breakdown of the mcv/mch. I hadn't looked it up yet.

@zzzdj: thank you - that's really helpful to hear...my doctor has it written in my chart too not to do a phleb if I fall below 10.0, so that jives with your experience with your hematologist. (I also see a hematologist and get my phlebs done in his office).

We'll see how #4 goes this week :|

although I think I'm going to have to cancel my camping trip to the mountains for friday and saturday nights...between the lightheadedness and the cold (brrr...37 at night is no fun for camping) I'll enjoy staying at home more :)