Hello,
I am a thirty-two-year-old female who was diagnosed with hemochromatosis a year ago. At that time, my ferritin was 225 and my sat % was 65. After only two easy phlebs, my ferritin went down to 27, and my doctor said I didn't need any more for awhile. I got tested every two months, and my ferritin stayed around 30 and my sat % around 65. For the past month I had been feeling kind of crummy--bad arthritis, really tired, and my period, which had already been reduced to light spotting lasting less than one day, didn't come at all.

When I got tested about a week ago, my ferritin was still pretty low (43), but my sat % had jumped to 90%! My doctor said that my disease was progressing more rapidly. and that we had to do phlebs right away. My blood was so thick that it collapsed the tubing, and the nurse said that we'd have to try again later. She also had to poke me three times to even find a vein, because I only have one good one, and it's starting to build up scar tissue. On top of all that, my glucose is higher than it should be, but I don't have diabetes, according to a fasting glucose test.

Here are my questions, if anyone has any information or advice that can help me--I'm at my wit's end, and very frustrated!

1) Why would my saturation % be so high when my ferritin is low?

2) Any tips on making phlebs easier (I am already taking aspirin, drinking lots of fluids, exercising my arms, and applying heat)? Why did my blood come out so easily the first two phlebs I had done several months ago and now it's so hard?

3) Regarding the light/missing menstruation: has anyone else experienced this? Does it mean that I'm experiencing premature menopause? My period has been getting lighter and lighter for the last three years (it stopped completely when I took a birth control pill called Ortho-Tri-Cyclene, which I stopped two years ago--when I told my OB-GYN that I wasn't menstruating, he said that I sould be happy!). My sex drive has also been waning. I read an article about hormonal treatments for women with HH to restore menstrual function, sex drive, and reproductive abilities. Anyone familiar with this? I am scared that I won't be able to have babies, which my husband and I had planned to do in a couple of years!

4) Regarding the high blood glucose, is this amything that I need to be concerned about or address now? I don't want to get diabetes!

5) Any tips on the arthritis? The only thing that seems to help is Ultram, but I don't like to take it all the time, because it makes me feel a little hyper! But I'm tired of hurting all the time--especially my feet in the morning, and my back, neck, shoulders and hands all day long! My hands are cold all of the time, and I feel like I can't grip things as well as I used to. Has anyone found that exercise helps the arthritic pain? I used to walk a lot, but lately I've been too sore and tired to feel like doing it much--but I will force myself if it will make me feel better afterward.

I'm sorry to sound like so much of a whiner, but after my last phlebs, I felt like my HH was under control, and now I feel like it's spinning out of control at a rapid rate! I'm too young to feel this crummy!!! Any halpful advice would be much appreciated!

Thanks a lot,
xxx

Hello xxx,
I'm a 53 yr old mother of three who spent most of last year trying to convince my doc I needed phlebs even tho my ferritin has never been above 114 while sat was around 90%. Because of the low ferritin, he didn't think I had a problem! I insisted he run a DNA test and found I do have HH. I wrote to several specialists asking how low can ferritin go and each told me to keep it at 10 or less for the rest of my life. The main one was Dr. Eugene Weinberg at Indianna Univ. He has been researching HH since the 50's, and his literature was a big help. He said that they hadn't run into very many people with our problem, but the ones they know about seem to have problems with hypoglycemia. Whether or not these people develop diabetes, they don't know yet. Some reasons he suggested for the low ferritin might be not drinking enough water, not having a "fasting test", or having elevated sugar due to drinking a lot of fruit juices or having a mild diabetic condition.

: I also have thick blood that clots the needle, and only one good vein that has been scarred. I take various vitamins, but Vit E is said to help thin the blood. If you don't use it right now, start at 200 IU's and ease up to about 600 IU's over several weeks time. Don't take a large dose right off the bat. I also use a baby aspirin a day several days before a phleb while drowning myself in gallons of water! I've had about 8 phlebs of 250 ml each and find that the blood is getting thinner, so there is hope. I also ask the tech to use a butterfly needle attached to a large syringe with which he can vacuum out 60 mls at a time. When its full, he switches it with an mty one. It's made it a lot easier as it takes a little vacuum to pull out that thick blood, and it gives it less chance to clot as its kept moving. The problem with the menses is that HH affects reproductive areas in men and women. Below you'll find several sites that should help educate you on what you're dealing with. Another thing to watch for is your thyroid. I had several strange symptoms, and found that my thyroid had shut down. I don't have as many problems with pain as some of the people on this chat group, but I do find that if I have too much blood taken I get joint pain. According to Dr. Weinberg, it can release too much iron out of storage and deposit it in the joints. As I'm a small person, I keep it under 250 ml's a go. The sites I mentioned are:
: 1. the American Hemochromatosis Society at americanhs.org. Especially look at americanhs.org/faqs.htm
2. Iron Overload Disease Association at ironoverload.org, especially ironoverload.org/facts.html. I Wrote to Steve Barfield with this organization with specific questions about low ferritin and high Sat and he was very helpful.
3.Check cdc.gov/ncidod/eid/vol5no3/weinberg.htm for good info, especially pgs. 5,6 &7
4.The Iron Disorders Institute at irondis@aol.com with whom Dr. Weinberg works.
5.For management of HH go to acponline.org/journals/annals/01dec98/mgmthem.htm
6.And finally tpph.html for more info.

If I can help with anything else, holler back! Keep getting phlebs (you'll drop about 20-30 points on your Ferritin with each) until your sat is down, although you may have to go slow. I had 4 phlebs of 250 ml's in a month then dropped to twice/month, and am now at once a month. My ferritin is around 5 and sat is down to 54 so things are improving! Hang in there, educate yourself as much as possible, and if your doc doesn't cooperate, find someone who will. You've got to be proactive with this because they'd just as soon not mess with it! We're a bundle of symptoms and just have to deal with each as they arise....Good luck...Wendy