Does hemochromatosis cause liver problems?
User rating for this question
I am of Irish descent. My father had phlebotomies when I was a child but I never actually knew why. He died at 56. He had cirrhosis. My sister died three years ago at 68. Totally a non drinker with an artificial heart valve. Died of cirrhosis. I got extremely sick a year ago. My doctor didn't knw what was wrong with me. I live in Illinois but have a house in Arizona. I went to Mayo in Arizona. At the time, I was too sick to fly because I could not sit up long enough to fly. My husband made me a bed in the back of our SUV and drove me there. I have had three heart stents. They did all kind of tests. I was on insulin for diabetes (I'm not diabetic now) my copper was high, I had liver problems, XXXXXXX I have a tumor on my kidney. All of my blood work was crazy. They treated all those things but never found why I had them. My iron was 700 with a 100 % saturation. Because I was on Plavix at the time, they wouldn't do a liver biopsy or a heart biopsy but wanted to. I was there a month (outpatient) and they took blood every week a couple of times. I sponetaneously got better. They also would not do phlebotomy because my iron wasn't a 1000. So, now it is beginining to get high again and I am getting sick again. I know it is hemachromatosis but because my level doesn't reach 1000, they ignore it. My sister's wasn't either and she died. They are going to let me die. What can I do?
Posted Sat, 14 Dec 2013 in Cancer
Answered by Dr. Robert Galamaga 21 hours later
Brief Answer: Concerns and Options Detailed Answer: hello again thank you for sending the question. Iron metabolism can be a very complex type of mechanism. There can be many different potential causes of elevated iron levels. If you believe you have some type of genetic syndrome which causes elevation of your iron level this should be evaluated with specialized genetic testing. Your doctors may have considered the possibility that you might have a situation of hereditary hemochromatosis. this is a particular disorder which can cause abnormal metabolism of iron and it can eventually lead to problems with liver function. I am not sure if this is exactly what you're dealing with but it should be considered if you are talking about his situation with significantly elevated iron -level particularly the ferritin level. a gastroenterologist might be able to help you in this type of situation. If the biopsy is not possible your Dr. might request an MRI of the liver which can also assess for damage from elevated iron. I can appreciate your dealing with a very stressful situation. I would continue to work along with your primary care doctor to establish relationships with physicians who have expertise in the field of iron metabolism. I am not sure if this completely explained all of the symptoms you're having but it is certainly worth exploring further. Sincerely, Dr. Galamaga
Follow-up: Does hemochromatosis cause liver problems? 3 hours later
I was at Mayo for month. I saw several gastroenterologist. They had differing views. I saw the doctor that was the main guy of the liver transplant journal. One said I had HH, the other said the genetic testing said I was a carrier.There are no doctors in my area that have expertise in this area. They simply go by the books and numbers and if you don't meet that criteria, you don't have it. And you are correct., your answer did not explain my symptoms, not even close. You are as vague as the doctors I have seen were. I wonder why because this is a common disease but doctors don't seem to have any idea what it is.
Answered by Dr. Robert Galamaga 34 hours later
Brief Answer: Followup Detailed Answer: I am so sorry that you're not getting answers that you really want and need. I can only incurred you to continue to look for expert opinions which are available at university centers. Mayo Clinic is excellent but there are many other gastroenterology centers throughout the United States which might be able to provide you with some additional assistance. if you would like to upload some of your laboratory data perhaps I could give you some more specific information so that can be satisfactory to your expectations. Otherwise it is very speculative to comment on a situation without concrete objective laboratory data. I would be happy to review all your laboratory data if you have some time to upload. Sincerely, Dr. Galamaga