Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
Hi everyone!! I don't post much but do read all the time. I've read posts here by some other members about how much I should maintain my ferritin levels. Some here say 50, some say 100. My Hematologist wants it under 50 and I have been under 50 for the last 4 to 6 months. I was going to post this before but it comes out as a picture. You can't copy and paste it and since I have been a little lazy lately didn't want to star writing it. LOL! So tonight I just copied the link so everyone can read the article which has me exited and will start this treatment with my Hematologist September 25th.
http://www.ironoverload.org/information/images/treatment-pt1_01.jpg
Read the "Treatment" part.
Don't know if anyone posted it before or if anyone has tried the treatment. I will omit a few things but you can read it on the link I provided.
*Goal of treatment = To reduce and maintain ferritin below 10.
The logic of the protocol treatment is to induce a mild anemia and maintain it until the storage Iron is greatly reduced. Serrum Ferritin is the measure of storage iron and this number needs to come down below 10. This is accomplished by bloodletting - therapeutic phlebotomies . The schedule of the treatment should be twice a week or at least once a week. The best outcomes are achieved by aggressive treatment. timid treatment does not work.
It is important to establish an anemia and not let up on it until the iron de-ironing has been completed. "THIS PROCESS CAN ARREST OR REVERSE MOST SYMPTOMS AND RETURN THE PATIENT TO A NORMAL LIFESPAN. SOME PATIENTS MIGHT EXPERIENCE A COMPLETE REVERSAL OF ALL SYMPTOMS "
So there you have it. Hope it is of much help to all. Until next time my fellow Iron Men. God bless us all, everyone. ;-)
http://www.ironoverload.org/information/images/treatment-pt1_01.jpg
Read the "Treatment" part.
Don't know if anyone posted it before or if anyone has tried the treatment. I will omit a few things but you can read it on the link I provided.
*Goal of treatment = To reduce and maintain ferritin below 10.
The logic of the protocol treatment is to induce a mild anemia and maintain it until the storage Iron is greatly reduced. Serrum Ferritin is the measure of storage iron and this number needs to come down below 10. This is accomplished by bloodletting - therapeutic phlebotomies . The schedule of the treatment should be twice a week or at least once a week. The best outcomes are achieved by aggressive treatment. timid treatment does not work.
It is important to establish an anemia and not let up on it until the iron de-ironing has been completed. "THIS PROCESS CAN ARREST OR REVERSE MOST SYMPTOMS AND RETURN THE PATIENT TO A NORMAL LIFESPAN. SOME PATIENTS MIGHT EXPERIENCE A COMPLETE REVERSAL OF ALL SYMPTOMS "
So there you have it. Hope it is of much help to all. Until next time my fellow Iron Men. God bless us all, everyone. ;-)
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Are they right? I have been going to this website for some time now and have red a few good articles. Just wondering if anyone has tried this treatment and how it has worked for anyone. If not I will be the one informing you on how it works because I am willing to try anything to make my symptoms go away. Wish me luck because I am starting this treatment September 25th. My Hematologist won't do it twice a week, we will do it once a week.
Generally speaking, I think it's usually used for people as a last resort bc their veins can't handle phlebotomies or for some other reason AND bc phlebotomies DO WORK. I decided NOT to consider it after I read the side effects.
Ferritins are usually considered good at 20-30 tho the 'normal range' is higher on our lab results. Many of us who are now de-ironed find that we feel better at different levels. Some feel better if they keep it between 25-50 so we just have to find what feels best for US. I'm below 46 (will get ck'd in a few weeks). Refer to other sites, not just the link you provided while you gather your info.
Try the Canadian Hemochromatosis Society or The American Hemochromatosis Society websites for specific HH info. Yes, I have referred to the above mentioned website, too.
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The reason I am trying out the treatment on Sept. 25 is because of this part of the article:
"The best outcomes are achieved by aggressive treatment. timid treatment does not work.
It is important to establish an anemia and not let up on it until the iron de-ironing has been completed. "THIS PROCESS CAN ARREST OR REVERSE MOST SYMPTOMS AND RETURN THE PATIENT TO A NORMAL LIFESPAN. SOME PATIENTS MIGHT EXPERIENCE A COMPLETE REVERSAL OF ALL SYMPTOMS "
Thank you all for your reply's and help.
I am one who keeps my ferritin low. I like to keep it around 20 and below 40. I phleb every three weeks. I test my ferritin every nine weeks now. I used to test it every phleb but it maintained for over a year so to save money I test every nine weeks. I started at 2400+ and went as low as 8. I do not have any sympyoms left except my fingers will get sore if my ferritin goes over 50. I will phleb even if my ferritin is at 20 because in three weeks it will be up to 20 or higher even with a phleb. I am a fast loader so I keep good track.
I feel better, my veins aren't as stressed, and my overall health is better at higher levels.
http://www.haemochromatosis.org.au/GPResources.htm
Not to mention the British, Dutch, German etc.
As for inducing mild anemia this is true but a level of 10 is extreme & you stand the very real possibility of becoming "iron avid" (which is bad!). Most people will be slightly aneamic by the time their ferritin drops below about 60 or 70, so their is no need to go anywhere near to 10. Though a few people do say they need to be lower than 50 to feel good, but this is normally ferritin more in the 20's, judging from posts.
Also most authorities recommend that once you are deironed (3-6mths at around 50 for most) ferritin levels then be kept between 50-100. (e.g. see page 15 of this EASL publication http://www.easl.eu/assets/application/files/03d32880931aac9_file.pdf )
My advice is go to just below 50 and see how you feel, if all is good than you can probably set your maintenance somewhere below 100 at a level you feel good at. If on the other hand you are not feeling better just below 50 then start to go lower until you hit a level that makes you feel better, some people like Gidget need to be at these lower levels.
Personally I am struggling below ferritin level of 60. I've gone from feeling fine to feeling tired all the time (I've only just reached 60 on my 2nd last phleb, so a bit early to tell, but it looks like I will need to be closer to 100 now I've reached maintenance to feel good.
It can be confidently assumed that excess iron stores have
been mobilized when the serum ferritin drops to
between 50 and 100 lg/L. As the target range of 50-
100 lg/L is approached, testing may be repeated more
frequently to preempt the development of overt iron
deficiency. It is not necessary for patients to achieve
iron deficiency and in fact, this should be avoided.
Phlebotomy can be stopped at the point at which iron
stores are depleted, and the patient should be assessed
for whether they require maintenance phlebotomy. For
reasons that are unclear, not all patients with HH reaccumulate
iron and, accordingly, they may not need a
maintenance phlebotomy regimen.
Read it at the Iron disorders inst.
http://www.irondisorders.org/Websites/idi/files/Content/856494/AASLD%202011.pdf
Do you have any idea how bad that can make you feel?
It feels terrible! Trust me!
Do you have any idea how bad that can make you feel?
It feels terrible! Trust me!