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.
Hello everyone,
Thanks for allowing me to join. A few questions:
What are your symptoms as a result of iron overload?
Once you began therapy, did they subisde? Which ones? How long did that take?
Thank you,
#newtoHH
I have the single gene version of hemochromatosis and I cannot say that I had any noticeable side effects from having high ferritin levels. The doctors monitored my ferritin levels for nearly a year before finally recommending action (blood donations). My ferritin levels varied between 600-1,000 over that period of time.
My blood doctor told me to start blood donations at an accelerated level (8 in 9 weeks) and that got my ferritin level down to 9. That was low enough for him to have me stop donations for nearly a year when my ferritin crept back up to high normal (150). He then had me do three donations in three months which drove my ferritin level back down to 19, too low. So now I am on a wait and see mode until the ferritin increases back too high. Probably 6-12 months,
After my ferritin levels were back tp below normal and increased back to high normal, I never noticed any difference at all.
I beleive that everyone is different. Some have reported severe symptoms with high ferritin,but I was lucky that I had no symptoms that I noticed anyway.
Do you have any symptoms? If so, I hope that they are mild and easily reliefed.
Good luck!
It's not I who has HH, actually, but my partner. He has very high ferritin levels and had his first blood donation of Friday.
I'm desperate to hear from someone who has had the severe symptoms he has and that treatments helped.
The nurse who assisted in his phlebotomy told him, "No, this isn't going to help your symptoms, necessarily." He had maybe, at best, a tiny shred of hope and she set it aflame. :(
I read your other post where you descibe the suffering your partner is going through. You are to be commended for hanging in with him. Are you both sure that IBS is caused by HH? I have not read of that connection, but my opinion does not mean much when it comes to IBS.
IBS, from what very little I know, seems to be a rough problem. I assume that your partner has seen a GI doctor(s). You may want to consider finding a functional, or alternative medience, doctor. They look at problems much differently than conventional medience doctors. They look at the whole person, not at the specific condition that is within their wheelhouse. Just a thought.
Best of luck to both of you.
I actually found several blogs on here about IBS-like or IBS symptoms related to Hemo and they're lessening or even disappearing upon treatments.
I've never wanted anything so much right now than for him to be free of this agony and be able to live a full and happy life.
Just make sure that you and your SO are very confident in the doctor that made the connection. Just curious, but what type of doctor made this connection?
In any case, the ferritin level must be reduced down into the very low normal region. How many blood donations that this takes seems to vary considerably depending on the type of Hemochromatosis (1 or 2 gene version) and I guess other variables that are beyond me. I was very lucky in that my ferritin dropped quickly, much quicker than I expected. In case he has not started yet, tell him that the blood donations for me turned out to be much easier than expected. Each one took less than 6 minutes once the drain started. No after affects, but I do sleep better the night after a donation for some reason. I really expected something after 8 donations in about 9 weeks, but nothing different from #1 to #8, and now after three more.
Please remind your SO that even though Hemochromatosis is genetic and therefore not curable, it is very treatable down to the point that it is then not considered to be a risk factor for other medical conditions in the future.
From what little I know of IBS it seems to be a difficult nut to crack even without iron being suspect. I think that rabbit still needs chasing; aka second, third, fourth, etc. opinions. I guess once your SO's ferritin level is back to normal you both will know if the two are really connected.
You seem to me to be very supportive and I highly commend you for working with your SO to try to find a solution. Both my wife and I suffer from longterm, and permanent, chronic medical issues (different problems) that cause both of us pain and other issues every waking moment. However, we are both in our upper 60s now so we do not have the same future issues that your SO is worrying about. I am sure that he is having a very difficult time trying to cope with what is going on now and how this all affects his, and both of your futures. Don't either of you give up, there has to be a solution.