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.
Back in mid 2014 we found out my aunt had HHC and were all encouraged to get the DNA test done. I made an appointment with my family Physician and got the test done. My results came back negative for the C282Y mutation and Homozygous for the H63D mutation and I was informed I had a less than 2% chance of having HHC, my Dr. ordered the blood test and said my results came back normal. Fast forward to 2 weeks ago I was having a chronic pain in my neck and made an appointment with my Dr.'s office but couldn't get my regular Dr., after he looked at my neck he started reading through my files and said that I needed further screening for hemochromatosis. I got my blood work done and after a week received my test results in the mail my Liver enzyme ALT was high and my Ferritin level was 435, this made me very unsettled that I could have been taking care of this 2 years ago. So I found my copies of my first iron test in 2014 and my other Dr. only tested for the 3 test on iron binding capacity and didn't even bother to test for Ferritin. Now I'm probably going to need liver biopsy and hope that my liver is OK. What do you think if anything I should do about the first missed diagnosis, is it a form of malpractice?
I am really sorry to hear that you could have commenced treatment earlier for your condition as it may have prevented some of your health problems.
Here in the UK it is very difficult and costly to prove medical malpractice. The alternative is to find an ambulance-chasing law firm but if the case is won, the law firm ends up with most of the money gained.
I would only go down this route for something extremely serious. I would not want medical staff to feel uncomfortable whilst treating me as I rely on them.
I am annoyed that my blood results showed increase ferritin a long time before HH was diagnosed and I would have had far fewer problems with my bones and therefore an improved quality of life.
I can't change this situation now though as the damage is permanent so I have tried to build good relationships with the medical staff who treat me and I have found enjoyable things to do that are less physical.
If you feel strongly about the medical negligence issue you could have an initial legal consultation and then decide whether or not to pursue it.
I hope you find the right solution for yourself.
Christine
Whether he is guilty of malpractice is another matter. At the very least, if you are experiencing medical issues because he didn't order appropriate tests for you, his practice/the hospital should pay for all testing and treatments that stem from his dropping the ball.