I would say you should eat a little iron to get your levels up a little.

Do you eat any red meat at all? If not, you should. Do not take milk products or calcium (interferes with iron absorption) with the red meat for a while and see if that helps.

I made the mistake of not eating any beef, lamb or dark poultary meat when I first was diagnosed back in 1998. While it helped bring my SF down before I hit maintenance, once I was in maintenance my SF got too low.
Now I eat beef maybe once a week. I do have problems with the TS% getting wacky at times. For me I need to keep TS% below 40% to keep away the brain fog.

I was at a ferritin of 4 after my year of deironing. Yea I don't know what's worse, being at home feeling like junk overloaded on iron or being sent by your company for 3 weeks to Fairbanks, Alaska while being anemic!

Lol, hope you feel better. It will come back up. I felt much better after about 2 1/2 months.

Yes, it is possible. I entered into that zone when I was bled down to 22. I felt exhausted all the time. Couldn't even get through a normal day without feeling like I got hit by a truck. Eat some iron rich foods to get it up a bit. I felt better once my number rose to 38 but everyone is difference. I believe I also experienced iron avidity.

My Ferritin has been at about 11 for close to 6 months and I haven't had any issues at all. I guess we are all different.

I was diag. in 4/09 with a Ferritin of 900, sat. 65%&, confirmeb by liver biopsy. By 1/10 the doc that was treating me had me down to Ferritin 6.5. I was very weak and prone to 'crashing," especially after phlebotomy. I was at the point of, "is this is good as it gets"? I then went to see a HH specialist in Houston, TX who knew my specific genotype (C282Y x H63D) mutation could tolorate a higher Ferritin level without iron related organ damage. He then recomended cautious administration of Iron. My Ferritin is now greater than 50 and I feel much better. I recomend that every HH patient see a doctor who has treated many cases of HH and is experienced with the various mutations C282Y, H63D, and S65C.
Note of caution: 8 mo prior to the high Ferritin levels noted in the spring of '09 NO high iron levels were noted on a routine exam.

Hi

I'm new to the support group. My ferritin is currently

... I don't know where the rest of my entry went!!! Let's try again ...

My ferritin is currently

I'm not sure if there is a gremlin in the system but this is my third attempt to add a reply!

My ferritin is currently less than 5. I had 4 phlebs in December and now starting to feel much better although I think I need another one but don't know whether I feel up to it just yet.

Hougl,
DO NOT have another phleb until you're over 40 SF. It's your body not the doctor's.
What are your other labs, saturation %, hematocrit, hemoglobin? What were your original labs?
Eat red meat but not with dairy or calcium. You might want to drink citrus juice like OJ or lemonade with a meat meal.

JMHO

I agree with comments that you (Toxicberrie & especially hougl) can probably take a break from phlebs for a while, eat a normal diet to rasie levels a little (maybe even indulge yourselfes for a bit!). There is no reason to have levels so low that I'm aware of, as as others have said too low is likely going to make you feel bad.

hougl, what are your other numbers? (i.e. % sat & iron)

I even question if having ferritin level below 50 permenatly is appropriate for all HH'ers. The reason they say 50 is to be sure you are slighlty aneamic (most people become aneamic around 60ish, I read) , 50 would be good for us for a time until all excess iron is drawn out of organs etc. but once organ levels are within normal range why do we still need to be kept below 50? (liver would load iron first but if we manage it properly i'd have thought it would be OK) I would have thought mos of us could then return to the lower range of normal levels unless we have liver damage or similar. I've never heard a satisfactory explanation as to why we can't, but would love to hear it if anyone knows .......

I like to keep my ferritin around 20 to 40 because that is when I feel best. When it gets over fifty my joints in my fingers will ache. You will not be anemic if your hemoglobin and or Hematocrit stay in normal ranges in which mine do. I also like to keep it low because if there ever was a time that I had to go without Phlebs I might need the extra time given by being low. I am not saying it is for everyone we all need to listen to our own bodies, I am a fast loader but I also am very healthy and live a very normal life. I also do not totally avoid iron, we still need it just not as much as everyone else. Everything in moderation.

I'm with GidgetD. I need to keep my ferritin bet 20-40. After that I get brain fog.

I don't avoid iron any more. I just restrict the amount and portion. We still need iron so we don't become anemic. I've never been anemic even my ferritin was as low as 6, my hemoglobin has never dropped below 12.0.

Hi Everyone

Excuse my brief opening entry, 3rd time lucky but kept it brief just in case it didn't work again - I was having technological trouble but all sorted now!!

I was diagnosed with HH Dec 2005 (C282Y and H63D), ferritin of 800. The plan was to get this down to 50 and then I "would feel much better and be back to normal". I was still really symptomatic at 50 and so my gastroenterologist/hepatologist said we needed to get it down to 20. Still symptomatic. He sent me for a battery of blood tests to make sure nothing else was going on - everything came back normal. I knew it must be connected to the iron as I almost had instant relief from the phlebs. The plan at this time changed to when I felt symptomatic, to have blood test and if my hb was above 10, I could have a phleb. At this point, I was no longer governed by the ferritin readings, only the Hb. My ferritin has been below 8 for probably two years now.

When I'm well, I'm truly fantastic BUT ...

I have sporadic periods of terrible symptoms, to the point that I think I may well just die which sounds really drama queen but these times are just the worst. I noticed that at these times, my hb has always risen to 12 (within 0.5 either side). So the great plan now is to have my bloods checked every 6 weeks and to maintain my hb between 10 and 11 ... and hopefully this will keep me on an even keel. I really hope this plan works.

My doctor also raised the question of porphyria which hemochromatotics are at a greater risk of developing. I have been tested once for this but it came back negative althoug my doc says that I could still have it as it can be difficult to diagnose. Watch this space!

When I am at my worst I have terrible pains in left finger joints, headache, brain fog, abdo pain, constipation, nausea, struggle with lights & noise, shortness of breath, hair loss (don't have to wax my legs for weeks which is the only positive) amongst others but more than anything, I have this overriding feeling of simply feeling so poorly. When I'm well, ALL of these symptoms disappear. At the moment, I have been unable to work for 9 weeks and maybe one more phleb will do the trick???

Do others find this as well if they don't have a phleb?

I eat a normal balanced diet and don't restrict any of my iron intake, as directed by my doc. I've just stared taking multivitamins/minerals without iron as like many of you I wonder about the effect of having so much blood withdrawn.

Sorry for the essay!!!

As to the subject of keeping ferritin below 50, I stopped at 50 and my HEMO goal is to maintain it under 100. I am not symptomatic so that doesn't help me determine what's best.

I have seen advice on one HH website to keep giving blood until your HG stays below normal for 3 weeks straight. I think I have seen people post here that the HG stayed OK even with very low ferritin numbers.

I understand the concept of getting rid of almost all the iron in your body to "pull" the iron out of organs. But, I wonder if Ferritin does that already when you are around a ferritin of 50.

LEt me know what you guys think