It is frustrating, because we all want to see a quick decline in Ferritin. I took closer to 9 months to get a consistent decline. Remember the phlebotomies remove iron, and ferritin is an independent storage protein, not iron. Ferritin is a lagging indicator. Your body, having a bad sense of an upper limit for needed iron, is working hard to hold on to it. More complex things happen than just removing iron translating to a drop in ferritin. It can make more ferritin as a direct response to the drop in iron. So, keep at it, results are coming, but no one has a quick drop.

I am a strong supporter of wheatgrass as it helps remove iron
on a small scale, but continouos. After I started it, I saw the fluctuations go away. I was skeptical at first but there is solid medical study behind it and having started and stopped and started again I see it is effect.

My ferritin started out at 950, then I started what turned out to be 8 months of weekly plebotomies. It then jumped up to 1350 and when all over the place during that time. The target for me was 50 ug/l and that did take 8 months. Sometimes it would not change for up to 3 plebs in a row, sometimes it jumped up, then down dramatically. That is because the iron is coming out of the places it is stored, like your organs. Don't worry, just keep at it.

After that, I recommend you do a chelation test for heavy metals. I found when my ferritin was down to normal, the analysis of my urine after 1 IV chelation showed high levels of cadmium, aluminum & mercury. It then took about 20 chelation sessions to get those down to normal. Getting all metals out had a noticeable effect on my health, though I'm left with permanent arthritis and atrial fibrillation from the iron.

Ironic, I noticed the same thing, 3 treatments of the ferritin rising then a big drop. It was like a 3-2 - 3-2 cycle, though it evened out. It's like a watched pot.

Hello jlcv,

People with HH seem to respond very differently to treatment.

At diagnosis my ferritin was 387 and my transferrin saturation was 89% and my ALT level was raised.

Over a year I had weekly, then fortnightly, then 3-weekly, then monthly treatments and my ferritin levels seemed to go down fairly incrementally and there were no spikes (on the dates that my blood was tested). On the third day after treatment I always felt very much better. Apart from finding the treatment painful, I have tolerated it quite well.

In the last few months I have had some problems establishing a suitable interval for maintenance treatment and when the intervals between treatment have been longer it has taken longer than 3 days for me to feel the benefit.

As BruceKing has written the process is complex. At some point your results will improve and there will be a corresponding improvement in your overall health.

The only things I have done in addition to treatment are to adjust my meals - I bought an e-book for a haemochromatosis diet and I stopped using my cast-iron casserole dish and griddle.

Some other people on this forum use additional products but having been a chemist in a previous working life I am always cautious about doing this unless there is a properly researched evidence-base for the product.

It is possible that products that might suit, or perhaps might not harm, the general public may not always benefit people with HH. For example some people take Milk Thistle as it is thought to be of help with the liver but I found an academic article which concluded that it may cause liver damage in people with HH.

I hope you can achieve some level of stability soon.

Christine