I was diagnosed a year ago March with a ferritin level of 950. I began plebs scheduled for every 2 weeks and it shot up to 1350. In May last year they changed schedules to every week and measured ferritin each time. Sometimes it would go down a bit and there was a 3 week stretch that it stayed the same at 1000. It fluctuates while plebs are happening because the iron stored in the tissues and organs comes out at different rates. Don't worry, just keep the pleb schedules, you will get the iron out. It took 8 months of weekly plebs for me to finally get it down to 50. Now I go about once every 3 months to keep it at 50.

One other note, by the time I got to 50, my arthritis and atrial fibrillation was advanced and I was in a lot of discomfort. I had my other metals checked with 1 EDTA chelation and the urine analysis found my lead and other metals were also high. So, I went on weekly EDTA chelations and now after having 30 my health improvement has been miraculous. Iron is not the only metal that can seriously harm your body. But get the iron down first as it would interfere with the EDTA.

My test results Monday showed that I dropped 161.7 in one week! I know it's going to be a roller coaster with the numbers but at least I know the phlebs are doing some good! I go in tomorrow for my next phleb. Hopefully my numbers will keep dropping quickly! (I'm currently at 353.1)

My pain in my joints & hip were elevated last weekend but have since eased a bit. Fatigue and brain fog are common visitors also.

I will ask my dr about chelation.

I also had up and down readings and continue to. I started at over 3000 ferritin, and was on weekly phlebs for about 6 months before getting it down to around 200. It was a roller coaster ride, though, up one week way down the next. The best that I can figure, is this. As iron increases in the blood system, it becomes too much and the body decides that it will store that iron anywhere it can. Liver, kidneys, brain, wherever will accept the extra iron. As phlebs start to pull iron out of the blood, it also pulls it out of these other tissues as the body now sees a lack of iron (although still high, the body is used to higher iron levels). Thus, when we get checked, sometimes more is pulled out of tissue than is pulled out of blood, and this is why we sometimes get higher or similar readings even though we're phlebbing. All should be seen as positive though, as the iron in the blood is not causing as much problem as iron in the tissues. Hopefully this helps, and sounds like you're on the right path.

Another week done and my levels dropped another 123 pts! I felt absolutely horrible after my last phleb. (shortness of breath, dizzy, racing heart, and seemed like I was looking thru rippling water). Dr put me on bed rest for a day and told me to hydrate well.

I go tomorrow for another phleb and then they are going to try bi-weekly phlebs. I've dropped 293.7 pts in 4 phlebs which puts me at 230.4! Still have a ways to go but its improving!

Well, after 6 total phlebotomies (including the one my #s raised in), I have dropped 445.4 points! My current level is at 78.7. The only problem is that my hgb dropped to 11.5. The dr pushed me back another week for the next phleb but I'm glad to almost be at maintenance stage!

That is pretty awesome Zappy1! My levels were at 379 when I started my phlebotomies and was diagnosed w two of the mutated C282Y gene. At the time I was taking a vitamin that was high in iron but had not clue I had hemochromatosis or what was really going on with my body. Stopped the vitamin and 3 weeks later it went to 279. After 3 phlebotomies of 250cc taken out, my levels dropped some to 245 then went up 259. My hematologist had me going every 6 weeks, then moved me to every 4 weeks. I get my levels tested again in November after 2 phlebotomies the months prior. Hearing your story gives me optimism!!! Congrats on your results!