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.

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Strype 12/11/2008

Hi. I'm Jon. I'm 29 years old from Alabama. I have a wonderful wife who is a nurse (RN). I have a 15 month old son who I adore. I am a needle phobe in the biggest sense. Really, I got a severe 2nd degree burn on my leg and never went to the emergency room. For 2 months I scrubbed (ouch) and bandaged it myself.

I had never heard of this disorder until my family physician suspected me of harboring it. Since 2006 I have had some problems with osteoarthritis. Recently it started getting worse so I went to my doctor. My father died from complications with juvenile onset rheumatoid arthritis so my doctor did a blood test.

Imagine my surprise when I got a call saying that "Your Rheumatoid levels are completely normal... But... Your liver enzymes are way up."

Turns out that my ALT = 199, my AST = 92, and my Serum Feritin level is oh just a measly 3,000.

Ugh. I just had a liver biopsy and there is a little scarring. It is enlarged. There was no cancer or cirhosis. Thank God! They had to sedate me after the IV because I went psycho. Ativan seems to help!

I am due for an echocardiogram monday since I've had heart palpitations for a few years. Anyway that's an overview of my story.

Any advice?

deleted_user 12/12/2008

HELLO STRYPE. SO DO YOU HAVE HEMOCHROMATOSIS? YOUR FERRITIN LEVLE IS QUITE HIGH. IS THERE ANYONE IN THE FAMILY THAT HAS HEMO. I HAVE IT BUT MY LEVLES ARE NORMAL RIGHT NOW. I HAVE BLOOD TAKEN ABOUT 4 TIMES A YEAR NOW. NOT WHEN I FIRST STARTED OUT IT WAS EVERY 2 WEEKS FOR AWHILE TO GET THEM DOWN. LET US KNOW HOW YOU DO. ANY QUESTIONS JUST ASK

Strype 12/12/2008

Thanks,

Yes I just found out that I have a 2nd cousin who has Hemochromatosis. When the doctor called me the other night he forgot to mention the DNA results, but he did say "This is concerning your hemochromatosis" and he told me that my liver is full of iron. He told me to start phlebotomies with a Hemotologist he sent me to.

deleted_user 12/13/2008

anyone with ferritin of 3,000 has hemochromatosis. don't need a gene test for that. the gene test is the least valuable piece of information.

strype i am sorry about your news... but finding it out is lifesaving for you. the sooner you get that ferritin down the better. i'm sorry but you will have to overcome your needle phobia, there's no choice. if necessary, medication and psychotherapy may help with the phobia. how soon are you seeing the hematologist? it will take at least 6 months to bring it down... phlebs twice a week if possible, once a week if its too hard on your body. read previous posts to learn more. i look forward to seeing you here again...

Strype 12/18/2008

Thanks,

I have been prescribed Ativan. I took it about 2 weeks ago before some lab work and for the 1st time in my life I didn't have a reaction. I did great!

I hope it works for my phlebotomies. My first one is tomorrow.

deleted_user 12/19/2008

oh thats great that you were ok last time. all the best for tomorrow. you may feel very tired for a few days afterwards as your body draws on the stored iron to make new red blood cells. ways to manage this fatigue are to take folate and vitamin B12, and to drink lots of water. there is specific info on how much, in previous posts.

as my iron has never been high enough (yet) to warrant phlebs, i must say i don't know what its like to have one. but i have had countless IVs, so i know about that.

all the best, and be sure to let us know how it went.

deleted_user 12/20/2008

Wow! That is a high ferritin! I'm glad you're getting started. I was just diagnosed this summer and while I am not phobic about phlebotomies, I can share some tips to give to your phlebotomist to make it easy for you, as I ended up changing locations. First, have a warm wet compress applied to your arm to prepare the vein, then have a blood pressure cuff applied to your upper arm for pressure (not a band). It is much more gentle and provides a consistent pressure. Third, DON'T LOOK! :) Good luck!

Strype 12/22/2008

Well I went. I took 3 ativan. I was doing great until it was almost over when I felt that feeling come over me.

My blood pressure went from 125/80 or so down to 90/60 and my eyes started to roll into the back of my head.

How annoying. It doesn't even consiously bother me anymore, but I guess there is more at work in my subconsious than meets the eye.

I have to go back Friday, the day after Christmas. Oh boy. I think I'll take the I.V. and the sleepy medicine this time.

deleted_user 12/23/2008

all the best for the next one Jon. i have had low BP like that too, yuck. but in my case it was physical and not related to anxiety. i've never had a phleb, but i presume you are sitting in a recliner type chair? wouldn't it be better to be lying flat? that seems to be the best position for avoiding low BP. also, should they pause the phleb for a few moments (if it's due to loss of blood)? i have read on here about some people only being able to tolerate 250ml phlebs (physically) or spacing them further apart. but i hope you can have them as often as possible cause you need to get that iron down asap.

anyway, keep up the good work, Jon, and merry christmas to you and your family. although getting the hemo news is hard, knowing you are improving your long term health is worth celebrating.

GidgetD 12/23/2008

Hi Strype, You have a very high ferritin levels. my ferritin was 2400 when I started my phlebs. I got phlebed once a week for twelve months and now I get phlebbed every three weeks to keep my ferritin down below 50. You should try to get that ferritin down especially if your ast and alt are elevated, Your liver damage can be reversed if you get your numbers down. My damage was reversed. Gidget

Strype 12/29/2008

Thanks Mystery and Gidget!

Mystery, I took 3 Ativan again and this time had them lay me down. I did great! It sucked and it was painful when she took the needle out but I did NOT pass out! The nurses all cheered for me :-)

Gidget, that is what I keep wanting to hear from my doctor! I think he is easing me into it because of the phobia and my age. I have a feeling that he will step it up in a couple of months. If he doesn't I may look for advice from another doctor. I quit drinking almost 2 months ago and I'm doing well now with the phlebs so I hope to reverse everything!

You guys don't know how great Friday was for me. I have been a needle phobe my ENTIRE life and I have taken a leap towards conquering my greatest fear. I am so happy.

They sure did tear my arm up though. I look like I've been on dialysis. My arm is torn up. Kind of cool though cos it grosses my friends out

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