janet
Dear Rita, I am a 40yr old woman, recently diagnosed this year with Hemochromatosis and I truly relate with what you are going through. I am a double mutation gene carrier, which means both my parents carried the gene. My mother died in '82 of Alzheimer's, and her only sibling of ambyliosis(thickening of the walls of the heart)sometime after. While there isn't any documentation of liver problems in our family, there are so many 'black' spots where there isn't any cause of death known. My grandmother died when my mother was 7 of causes unknown, and my grandfather died of diabetic reasons it is believe but also pancreatic cancer. My father has high blood pressure, gout, and diabetes but in pretty good shape for a man of almost 80-he refuses to believe that he gave this to me. I have two brothers, and one tested negative, but the other(whom always has stomach problems) refuses to go be tested. I am glad that you have found a doctor who is caring. I am alright with my oncologist though he is several towns away from me. My primary is new, as my health plan folded last year. I am on my second primary doctor from same health center. She seems nice. I started phleubotomies in June/July of '99 but it has been slow and I emphasize slow going. I am often times anemic and cannot give blood-the hemoglobin(how much oxygen is in your blood) should be atleast 12 and mine was anywheres from 10 to just under. Each time, I would travel to the Dr.'s, usually arranging time off from work, only to pay my $5. copay(now $10)and turn around and go home. At the same time, I was reading anything I could get my hands on-if you haven't already, pick up a copy of Roberta Crawford's The Iron Elephant. Every case I read about mentioned the patients were undergoing phleubotomy 2x per week. I was instructed to have treatments every 2 weeks. While, if you are tired after each treatment, you usually will be tired after all of them, so I've read and been told. But as you undergo more and more, you are suppose to become stronger. Well, I have only been able to have about 10 treatments since June. Not very many. If it isn't anemia, it is my cycle. In Sept, when Flloyd came to town, I had my 3rd or 4th treatment(at that time I was giving 1 pint each time)-well, I stopped at food store to pick up some items, and passed out in line, cracked my head and wound up in ER and now am giving only 1/2pint. My original FE level was 278; tibc-292; and ferritin 3125(I had 95% saturation. Now, I am at 1450 but saturation is still 90%-Dr. wants to get me to 20. Maybe in a year or more. If treatments don't pick up, I will be forced to go with the chelating agent which a nurse administers at home and causes iron to bind. There are side effects though, which have not been elaborated to me at this point. Rita, you mentioned being tired. How often and how much blood are you giving, and how old are you; if you don't mind my asking? I am sorry to hear about your sister. My16yrold daughter has one gene; but the primary dr., whom I have now switched from, said she merely has to go through genetic counseling when and if she decides to marry and have children. But I don't think it is that simple. The day I was told I needed a liver biopsy was Mar.2 and that was right after being told to go out and buy a good mulitvitamin for the family. I had to wait until June before a biopsy was done, and then things picked up. Still, I feel that I am often kept in the dark regarding my condition. I don't know if it is managed care today; but there have been so many medical delays, errors, that I have frequent mistrust for the field. I sometimes feel, that my phleubotomist is angered if I ask questions; but then consider my surprise to be informed that I might not be able to give blood the very first time, or that I would not be having the doctor oversee. there were never any explanations, and yet when I appeared anxious was it any wonder why when I was the last one to know what was going to be done for the day. Yet, before each appointment, I would make sure that one doctor had all the necessary info to give to the next one. Each time, as weeks went by, at each new appointment, the first doctor would not have sent all or any of the test results on to the next. So, when I felt left out with frustration,it was also due to all the effort I put into making sure someone else did their job(which was not my job). Initially, I went to my first doctor for an ordinary exam, but also having felt weak and had instances of vomiting and coughing, etc. I thought it was mold poisoning from the old apartment we left for a new home(yes, there was also a move going on at this time). My hands and fingers were so incredibly sore-on and off at first, but more and more so. In the spring, I winced when a neighbor came up to introduce himself and offered his hand. I also started having chest pains(which 3 drs. now confirm is mild mitral valve arrythymia). I am on prescription Folic Acid; and taking 300mg of B-6 each day, and B-complex for joint pain. It has settled in my elbows. Now I am taking DAypro which is new 2x a day for this but will meet with hand specialist eventually. Daypro is a strong Advil like substance(1200mg) but I am not sure I should be on this with a scarred liver. (I have only been on it for 2 days now). I also take Milk thistle for liver support(with silymarin in it). I have given up so many things(alcohol which I never really enjoyed much since college except for a glass of wine now and then); I quit smoking 2 yrs ago, I gave up coffee for tea(good chelating or binding agent) and use nutrasweet products but told to give them up as well. I don't mean to keep at this(this is my first e-mail of a personal nature) but I really don't think that the doctors know much of what to do. One of my doctors admitted that she had never heard of this either. Genetic tests were sent out and didn't return for months; a gland test I paid for which showed evidence of thyroid disorder was sent to another doctor in another state. I only received the bill without results. But routine bloodwork just showed I have normal thyroid activity. I had a nerve conduction test done, and that showed carpal tunnel evidence, though the attending said I didn't have it. That test took several months to arrive and the doctor asked me where it was done at(when she wrote the referral). The staff admits that for some reason tests often get sent to the wrong areas of the state. How nice! And yet there is always a copay when there isn't any resolvement of issues. Rita, you must visit more websites for further information on this. I found one that explained all the blood breakdowns. But read and reread, it is often confusing to me. One GI told my Dad and I that my daughter didn't have to be tested-the oncologist he referred me to said this is rubbish. I only hope more and more of the public becomes aware of this condition and takes it more seriously.