HUH? Your ferritin is1417 and they don't want to do phlebs????? The iron isn't what HH looks at, it's the ferritin. Plain and simple. If I were you, I would get on the phone first thing, and verify that your FERRITIN is over 1000. Then I would confirm that they state that this is NOT HH. If both of those are confirmed, I would slap that dork silly and quickly find another dr!!!.

first, have you had genetic testing done? I don't rely on this either way, at all, but I'm always curious to throw it into the mix.
Second, even IF the doctor thinks something else is going on, your ferritin still needs to come down, and the best and only way to get this done is by phlebs. That being said, you clearly have HH, find another doctor, now! You should be doing weekly phlebs immediatley!!!!! good luck!
Theresa

Nors, as others have said, when you need to phleb and for some reason the doc won't prescribe phelb - - go and donate. High ferritin is bad, but ferritin over 1,000 is very bad.

Find a new doctor....

Was just taking my morning meds and wanted to share.

Calcium is a great absorption prevention. I take Calcitrate 600D every morning.

Also, watch your bread intake. Almost all breads are iron fortified.

Norse, I and my Dr. go by ferritin alone and your is way to high. If you can donate go and do so and then gather all the info on HH\iron overload you can and take it back to your Dr and educate them, if they do not like this then find a different Doc.

Not for anything but my doctor told me that high ferritin can be high do to an infection. When I wasn't going down in ferritin levels after 12 phlebs, the doctor was going to have a full body MRI scan. He tested my ferritin one last time before and my number finally start to trend down... So we didn't go with the scan. You need the hh blood test and find out what else can cause high ferritin.

If you iron levels are normal, yes, too many phlebotomies would make you anemic.

I am currently at 26 on Ferritin, and I do have low RBC and iron, but not yet to the anemic state. In February, my iron was extremely high.

A full CBC is necessary when doing phlebotomy. Not only are you watching Ferritin, but you must also watch the other counts as well.

There are other causes to Ferritin besides HH. Elevated liver functions will cause your Ferritin to rise, thyroid will cause your Ferritin to rise. If your TS and iron are normal, then obviously you are not storing. I have read in the Medifocus Guide to HH that people with both copies of either gene never store iron or show symptoms, so they never have need for phleb.

Your Ferritin is high, but if you are not storing, there is still time to find the culprit to your high level.

I'm curious to know of others opinions on this. My husband is 15 yrs into this disease, and now both my teen boys are beginning stage. The statement of iron being normal would support this not being HH doesn't make sense to me. Iron and Ferritin are seperate issues, iron does not have to be high for you to load iron. Looking back at my husbands numbers, everything has always been normal, including %... regardless of how high or low his ferritin goes. He has had ferritin at 500, with totally normal iron. Can't say he wasn't loading. Also, elevated liver tests might support HH... as too much ferritin does cause damage to the liver, and it's one of the tests that all good doctors do on a HH pt at the beginning to make sure damage hasn't been done..

All that said, it is possible for there to be other reasons. But, if ferritin levels go down with phlebs, that goes back to supporting HH. And, in doing phlebs, it does no harm to your body.

Also, if you search around in these forums, you will find tons of people that are in fact storing, with any combination of genes.
Theresa

Norseman64 ,yes you phelb immediatly with a ferritin that high , thats what my docs did while they scratched thier heads trying to figure out the cause ,dont waste time ,donate !!!!

Theresa, when I was diagnosed my iron was not that high it was my liver function test that tipped them off to HH and then they did the ferritin test and it was over 2400, I have never had my sat% used or even checked. Yes you should go donate but that really isn't going to help a whole lot with a ferritin that high. You should be phlebbing weekly for many months to get it down. stay on your Doc you are your own best advocate and you know your body better than anyone.

Ferritin is what iron binds to. With HH, the genes we have makes the iron unable to bind to the Ferritin which causes the body to store iron. The body will naturally dispose of iron through hair loss, dead skin, finger nails and menstration.

With levels that high, yes there is something amuck. But with iron levels being normal, he will become anemic with phlebotomy. Fatty liver is a cause of high ferritin. The purpose of phlebotomy is to make your body make new blood which in turn will pull the stored iron out of your organs. HH is all about IRON. That's why it is referred to as iron overload disease.

I keep telling y'all that if you get the medifocus guide to hemochromatosis it will become your Bible. It is the most informative information out there.

Norse, fatty liver is a reason for concern. You need to find out the cause for it. If you are a drinker - STOP NOW.

I have had the Medifocus guide since I was diagnosed.