Hemochromatosis Support Group

my ferritin is at about 218 right now and yes,I can feel my liver sometimes the pain actually shifts around..but my alt/ast levels are fine,my DR said the same thing I just had a phleb and seems that after a week my liver has discomfort

Ben that ferritin level was high, I can't imagine how badly you must have felt and still feel, I started where you are now and had to phleb weekly for a year, so you still have a ways to go, but I load iron very fast so it may not take you that long. Did they say the liver fibrosis would improve after the iron is out or is it just wait and see? Best of luck and keep us informed of your progress, Gidget

Hello Gidget and Officer, Thanks for the responses. I am glad to confirm that someone else feels liver discomfort. Just to be clear… I also have thalassemia minor with HH. Thal messes with the hemoglobin component of your blood. Hemoglobin is the component of the blood that carries oxygen. I was hit with two hereditary diseases. You guys have it easy :) My hemoglobin is 11 on a good day and goes down a point with each phleb. Since the frequency of my phlebs is weekly, it is very hard for me. I can almost build up a poit of hemoglobin in a week for the next phleb. I have really bad dizzy feelings, breathing issues and chest pains.

The liver doctor said that the liver should go back to almost normal but it is still an unknown. I wish I could find someone that had liver fibroses and it is now gone or near gone from taking out the iron.

Another question, my ferritin does not come out of me in a liner progression. I went 8 phlebs and retested my ferritin to find out it went from 3860 3800. But I have also gone for 6 plebs and have seen a drop of 800. It is a non-linear progression. Has everyone else experienced this?

My doctor told me the ferritin test is not good in the upper ranges. As ferritin goes down, the test becomes more accurate.

-thanks Keith

Yes my ferritin seemed fickle when I was de-ironing. Sometimes it even went up, sometimes huge drops and sometime is stayed the same. I tested my ferritin at every phleb and still do. gidget

bejamink,
If its any consolation, I started with 453 ferritin and felt vague "pain or enlargement" of my liver and spleen until my levels dropped below 100. It seems as if iron is deposited first in the liver or spleen whether you have 6000 levels or have 453 levels. When my levels were about 200, I started "feeling" the liver releasing the iron like your doctor said. After 12 phlebotomies (3 months of weekly phlebotomies), I was at 65 in September and have made it through one month of no phlebotomies, still no pain from either organ. Some things I have been trying is to cut way back on heme iron (once a week) and exercising for at least 3 to 4 hours a week. On Tuesday, my ferritin will be checked to see if how much the level has risen. I hope not much, HH can be tricky and human bodies vary.
Best wishes for your continued success in reaching your optimum ferritin levels. You should be feeling better with each phleb. I know I have been feeling much better.

Sue Shue

When I first started with the phlebs, the inner part of my legs (bones) were in a lot of pain. That has gone away and now I feel it in the liver/spleen. I am praying that I can get de-ironed before my liver goes to stage 4. Weekly phlebs are really difficult for me. I believe it is due to my hemoglobin levels being so low. They have to check my hemoglobin level before each pheb.

Just a heads up for others that are new to HH. I had a liver doctor tell me that once a month phlebs is recommended and that my hemo doctor doesn't know what he is talking about and it could kill me going once a week. This liver doc came highly recommend and is a well know guy. Please get yourself a hematologist. I believe a fairly young doctor would be best since they are right out of school. They seem to be more familiar with the HH.

Ben, I do not agree with your liver Dr. I have to phleb every three weeks on maintenence, If you only phleb once a month your numbers are never going to go down and you are in dangerous territory right now. I think you should do your own research on this and there is plenty of information out there. i know some of us who phlebb twice a week. It is important to get those numbers down before damage cannot get reversed. IMO. Please do some research on your own.

Hi Gidget, Sorry if I wasn't clear. I did drop the liver doctor for the hemotoligist. I have phlebs very 7-10 days.

-Keith

Hi Keith, ya I figured that out after I looked at it again, I am glad you dropped him. He needs to do his research I guess. Let us know how things progress and when you really start to feel better. I cannot even put into words how much better I feel. I hope that for you too.

Keith,

How low is your hemoglobin? Have you talked to your doctor about supplements like B12 and Folic Acid?