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.
I was tested about a year ago after constant nasuea and just feeling sick and tired all the time. Ferratin was 987. Got it down to 47. The problem is no one seems to be an expert. I'm with Kaiser and they do try, but my doctors always says well at least its not cancer, most docs are oncologist. He Google's every time I tell him I have a symptom that he did not see in his journal! But from what I see this is the normal! I have not found one specialist in the U.S.A! Unless I'm under about 50 ferratin I have brain fog so bad, and the worst nasuea! Its hard to get out of bed! Does anyone else feel this way?
I do agree Kaiser has great aspects and I really do love them. I had given up on Doctors after my partial hysterectomy. It was after that my naseau started, I believe because I was no longer having periods. Now looking back I only saw an obgyn EVER, so who knows if my symptoms were what they thought or H.H.
My general doctor at Kaiser found my H.H. I really felt like he found a needle in a haystack! With so many undiagnosed people we are lucky when they find it! The Kaiser Infusion center is great, as I have said in other posts. And last Thursday I told my nurse who does all my phlabotemys about how I was feeling. She has done every phleb I've had. I'm now going to see another hemo doc and they want me to see my primary care, and a gastro. So I will be prepared! I have learned so much, and I think we can encourage our doctors to learn more too! Awareness, and knowledge!
So I'm hopeful, regardless I now feel the power to say I don't want my levels to go over 50! I'm not crazy, well at least about that! :) My phelbs are only $15.00 and my blood tests are free. So why not!
I seem to load fast, and am thinking I may need to do every 60 days. the last 2 weeks prior to the phlebbing, the arthritis gets real bad, more than normal. I try to journal but I have this foggy or was that froggy brain?? We all must standup for our selves . We are lucky there is the internet and this site, I was soooo scared when I was first diagnosed, cause I had limited resources for info on it. I stumbled onto the site, and the folks here are sooooo cool and will help us learn how to live with this. I was floored when my sister told me our mother had it and didn't tell us! Oh well I am rambling, just got off work, now i must prepare supper for my misses and me... yumm BBQ'd banana's
My suggestion is to repost your story under it's own heading, like that you are newly diagnosed or along those lines...otherwise you will buried in this long thread and will be missed. It's important for the new people to get noticed and ehlps others to offer good advice and answer questions. Even copy and paste your comment and give it's own headline. We would love to talk to you some more about your personal experience.
Take care, C
The problem is no two people are the same, but doctors treat us all alike..Post a little more about yourself..We are a crazy group, but we can at least blame it on brain fog....Welcome to our group...
My name is Carolyn next month will be year number 2 remembering the lost of my beautiful baby sister and best friend to hemochromatosis her name was Robin. Robin was a loving daughter, best sister ever, wife, mother to Jack and a talent R.N. She was also the daughter of a doctor my dad Jack (who passed of HH in 1986. There were five of us children now we are 4. 3 of the five of us are HH positive. So today 2 people I adored in my family are deceased because of HH both contracted cancer as a result of never getting their levels down.
My father never knew what he had. He was on the staff at CAMC in Charleston, WV when his HH manifest into lymphoma we began to treat the cancer and in 2 years I watched a very active man under go surgeries, chemo, test, treatments, experimental trails no one of his colleagues, specialist or even the renown caner treatment center in TN could get to the bottom of his illness. It was only 5 years later he, we were diagnosed. My sister Robin was pregnant with her first baby, (working at Lee Memorial Hospital in CICU) when her OBYN put her on Prenatal Vitamins in the first trimester as she was severely anemic. She felt fine, though the OBGYN still insisted. In one week of taking them she when to the hospital and was admitted to ER with her body racking in pain and swelling in every joint in her body. The doctors their thought she might have an infection, pregnancy onset lupus or God know what. They put her on steroids and ruled out everything they could. Infection control was call in. Robin began to get a little better but was on the Prenatal Vitamins still and had to off and on be on steroids due to the mysterious inflammations that would accrue through out the pregnancy they even insisted that she go to a shrink. Robin was tuff and said it will all be OK after the baby. After Jack was born the inflammation continued and she was lethargic all the time I think the doctors just became convinced that she had a head problem. So we began our screech for the answer to the big question. What did she have? She knew and I knew she wasnt crazy. After many difference big name places we finely found ourselves at Shames Hospital in Gainesville in front of the gastro specialist wondering would this visit lead down the same no where path. The doctor walked over to us and introduces himself and immediately took hold of Robins hands and said you have HH. We were dumfounded where were the test the long look at the notes and what the heck was this HH away? He began to explain all the associated systems. We told of our journey he assured us we were not crazy. We told about our dads death he said it was ashamed that we still did not have his liver slides that he was sure that no one thought to perform the Persian blue stain to see if he had HH. We call the hospital and 5 years later that still had the slide they preformed the test we had our answer our dad had HH! So Robin had an answer why was it sooo hard to get? The reason all of the various systems dont acure in all of us , and more importantly dont follow a give succession like most diseases. My of you many not show it in your hands like we do. Some have the discoloration of skin that can sometimes look like a tan or a grey. And so on. Bear with me as it is hard for me to write because I have the hands problem.( which is the first 2 fingers of each hand extremely swollen it makes bogging hard. I am trying to get a Dragon naturally speaking software program so I can just talk to this machine and it will write for me!!! Anyway back to Robin she would start to work on her iron levels then some crises would happen (like a hurricane) and she would tell me she would get back at it, but she never quite could keep it up! I however nagged all the time. I had to start my phemps and went 1 a week for 52 draws for a year and am now on maintenance.. I am not as good as I should be with the math of dividing the F in the TIBC and so forth thing but my ferritin level is 13.5 . Back to HH 1 in 8 our carriers, docs are very witless on the extent of HH I believe that in the next 5 years they will discover it is the main reason for most of the heart disease and cancer. Below is a very good website for all the questions on Labs/ systems and just about everything you what to know about HH who, why where, what. My hands are starting to wear out sucks!!!!!!! Sorry about any misspelling again tough with my hands sometimes. Please see the below for real information. I count on the Lord he is my ever present help in time of trouble.
Love to all Keep asking questions and looking for answers!!!!!! If a doctor doesnt hear you find another one.
Blessing
Carolyn Cstar- FL
http://www.americanhs.org/
My name is Leslie N Johnston, DVM. I read over most of the posts on this list and find them very interesting. I have hemochromatosis and have lived with it now for about 33 years after confirmation and treatment all along to now.
I invite you guys and gals to read a couple papers that I wrote and as I say many years ago about this mess and they have been posted on the net ever since then. They are "The Irritable Syndrome and the Iron Connection by Leslie N. Johnston, DVM" "Hemochromatosis: A Deadly and Undiagnosed Condition by Leslie N. Johnston, DVM". You can find these by searching in your search engine just as quoted.
Or, you can go to:munstermom.tripod.com/irritabl.htm and find them.
What I said in these papers was many years ago, but most of it still applies to day.
I hope to have my own web page up and running on the big H subject in about 30 days.
This will tell you folks where I am comming from. I am also making a vidio on the subject.
I hope all you guys and dolls have a happy day and continue to for at least 33 years as I have with a pretty good life.
The old doc said this.
The old doc said this