Hi Mapper
Hemoglobin and Ferretin are 2 different blood components. Ferretin is an indicator of how much iron is in your husbands system.
If your Hemoglobin count is too low they wont do a Phlebotomy as this may cause other problems.
So he will still have the high iron level, but they cant take his blood at the moment, taking blood every 2 weeks is less aggressive and gives the body more time to replace components such as Hemoglobin that he will also lose when he has a phlebotomy.
It will mean that it takes a bit longer to de-iron him.
I am on my 11 Phlebotomy and all was going well until number 10 and I have now started feeling unwell the day after the phlebotomy, my ferretin level has gone down from 700 at the start to 110 last week. Just had no 11 yesterday and feel very rough at the moment sick and very tired, but its a small price to pay.
I am sure that I have it right as I was talking to my nurse yesterday about this. Have a word with your doctor and press for answers I have found that if you don't ask you don't get. Its your husbands health so don't be afraid to ask the specialists what is going on and what they can do.
All the best Take care

Steve

So what is causing the low hemoglobin? Is this now something else we have to worry about? I wasn't with him at the appt. but he said the nurse didn't seem too concerned about it.

Hi Mapper
No sure what causes the low Hemoglobinm, trying to find out now.

Have a look at the site in the link below it gives some insight into the treatment etc

http://www.cdc.gov/ncbddd/hemochromatosis/training/index.html

Regards

Steve

Although I can't remember why anymore, I know that you can have preexisting anemia and HH. They're reliant on 2 different functions.

Also you can be bled into anemia.

You could do chelation therapy to get the iron down. That won't affect hemoglobin and it will also get other metals reduced. It does cost about $120 per treatment, takes about 30 minutes for the solution to get into the body through the IV and the iron comes out in the urine.

I had a ferritin level of 1350 in April last year. I had weekly plebotomies until January when my ferritin got down to about 50. Since I have other heavy metals I'm getting chelation now to remove them, however I have since found out that just chelation will remove iron. It's an expensive option, but an option nonetheless.

I forgot to add, it will take anywhere from 10 to 20 weekly treatments typically, though individual results vary.

Hi Mapper, the same exact thing happened to my hubby when he went for his 4th Pleb. The bone marrow cannot keep up producing hemoglobin and they become anemic. His Ferritin level was over 4500 when he started, but he came down fast. We took some sage advice posted on this website some time ago about taking vitamin b12 to help the bone marrow keep up. It did the trick and he only had a couple of times where he could not get one done. Once we understood what was happening, it was less frustrating.

Hi Mapper
I was originally told that they expected that it would take up to a year to reduce my level from 700 to 50, I have had 12 weekly Phlebs now. I saw my haematologist today 11/04/14 and she said that I am now down to 41 and that they are assessing my case but think that they will now put me onto maintenance I will find out next week.

The Phlebs increased my fatigue and general tiredness, but so many other small things have improved.
Take care