I am homozygous for the c282y variant My transferrin saturation was in the 90% range and my ferritin was 810 when I was diagnosed Interestingly my saturation stayed high until I got my ferritin down to 50, which took 26 venesections over a 7 month period Now they both hover around 50 with maintenance venesections every few months
I’m compound heterozygous c282y/ H63d. In the mistaken belief that I would be in a better position if my ferritin was very low I donated 4 times a year . Luckily I noticed I went anaemic and my free iron increased above normal. By looking into research I found a Norwegian paper that stated that for my particular combination of genes that happens. I only donate twice a year now. I have pains in my toes and hands and finding it difficult to get the doctor to understand without seeming like a hypochondriac. The joints look normal but a recent researcher Professor Graeme Carroll states that the iron in the bone is the problem source. And that high MCV values occur when bone destruction is going on. Which I also have.
My wife just found out she is heterozygous has terrible reactions to anything with high iron Multivitamins, and Moringa being the ones that come to mind and more information on those who heterozygous. Does this mean you have one or the other or a little of both.
Hola, soy española, con niveles de hierro muy altos, tengo H63D de forma heterocigota, y mis niveles altos de hierro no se deben a esta condición, sino que son porque tengo Beta talasemia minor (anemia del mediterráneo) y esta condición también hace tener niveles altos de hierro, pero mi hematólogo, no me hace sacarme sangre periódicamente, como sé que personas con hemacromatosis si lo hacen. Llevo una vida normal. Un cordial saludo.
good grief what has happened to me....cound'nt wait to listen to a youtube on homozygous h63d, i'm adrift, I'm sure now, because I listened twice, can you put a cute cat video in your background please.
I am rejected as a blood donor about 20% of the time... Even when I'm accepted, my levels are always on the cusp, which I believe is 12 or 12.5 for women, (can't remember the units). Am I likely to be doing more harm than good for my personal health? Also, does being anemic slow down all metabolic activity? I feel like I've aged a lot since giving blood regularly (but it might be a reverse placebo effect, lol).
Hi Chris, yesterday I have found out that I am H63D Homozygous, and that is after years of struggling with health issues. My doctor asked for a genetic test since I had Transferrin saturation of 66% (ferritin was 219 ng/ml). After that I repeated the test I had 61% saturation, ferritin 232. I looked at my blood works over the years (since 2016) my Iron levels were almost always in the range of 30-34 umol/l but no one suspected anything so I do not have TIBC or transferrin saturation from that time. But last week I got a bad viral infection and my most recent blood works show Fe = 12.6 umol/l (TIBC = 53.9, Ferritin = 165) and I calculated t. saturation to be 23.37 %. How is this possible now, could the viral infection drop my iron stores that much in 2 weeks? I am still waiting for a doctors appointment but I was interested in your opinion. I am a 32 y/o male.
im homozygous on h63d. and im scared to death at the moment. transferin is high 78 percent. ferritin is double then normal. im scared to death of the h63d sydrome since it says it always lead to very bad states. What should i do im scared to death
Hi Chris, I too have the same H63D homozygous diagnosis. Do you have any insight into H63D Syndrome? My hematology doctor does not seem to know anything about this?
H63D homozygous. High ferritin. All other labs normal except for high triglycerides. Lots of symptoms. So I’m the opposite of the H63D syndrome with low ferritin. Who do I contact for help?
