Hi. I was diagnosed with Hep C genotype 2 25 years ago, at that time I was told I was pregnant as well. Fortunately, my baby girl is Hep C free. I went through the "lab rat trials" at UCH CO, USA with Dr. Everson. Prior to my 6th, and hopefully cured now, drug Epclusa I was considered cured at 3 months?! My question is this:
I had ferritin levels over 350 and was tested for haemachromotosis and found I carry the female gene. Although I don't have this disease my iron and ferritin levels are always sky high. No Dr's treat me for this, Dr. Everson left Hepatology at UCH and I havo no clue if I am indeed cured? My 26 year old Son moved to Japan 2 years ago from the USA. He has always complained of joint pain, had a total shoulder replacement at age 17, sleeps all of the time, night sweats, lost over 80 pounds and appears to looks tired and says he eats all of the time. Last year he found a Japanese Dr that drew his iron and ferritin levels and idk what his iron was but his ferritin was over 800! I implored him to go for further testing and donate blood, he did donate blood but the prefecture he lives in only allows donations every 3 months. He found a new Dr last week and he asked them, in Japanese as he lives in a more remote part of coastal Japan, if they knew what this disease was and if they could test for it. They said "we will know based on your iron and ferritin levels".?! Ok? Mine were double the top end of normal and Dr's were shocked a was just a carrier. Can this be diagnosed without doing the genetic test? I 100% know he has this. His skin color, all of his symptoms fit but idk how to find a Dr in Japan that treats this? Diagnoses this? My Son really doesn't understand this disease but I scared him into getting his labs re-drawn. He is over 600 miles east and slightly south of Tokyo and cannot take off work long enough to go to Tokyo for testing. He lives in the Shizukoa prefecture. Any help would be appreciated. Thank you. Tara
Written by
TaraRae
To view profiles and participate in discussions please or .
Female gene? Do you mean heterozygous C282y, by chance?
If so, I know Dr Eric Lewis is hetero C282Y. I am, too; same for my daughter.
He really needs to go to his Dr with printed material about hemochromatosis.... he should tell them you have it.... and likely there are other family members with it, too. Considering his symptoms, he needs a full iron panel that includes ferritin, and not just ferritin. ETA: Oh, wait! I just read your post again. He definitely needs phlebotomy and get the iron reduced!!
I think I caught mine early enough before crazy high ferritin, but my serum iron and saturation percentage were way high.
December 2016:
[SI=226 ug/dL (27-159);
71% Saturation (15-55);
F=ng/mL (15-150)]
Donating blood about every 56 days since August 2016, so new labs are soooooo much better, PTL.
I was wrong about the type I carry. I carry the heterozygous gene: p.His63Asp mutation. I don't have hema I am a female carrier. I do have iron overload but I'm positive my Son has Hemachromatosis. He went to a "blood Dr", literally translated from Japanese, and they said he didn't have it as his ferritin and iron were high but not off the charts like before?! He donates blood every 3 months, not like in the states where we can donate sooner. He was in so much pain, couldn't sleep and had 3 days to wait until he could donate that he called me asking me where and how to get an IV and draw his own blood!? (I am a Nurse) Of course I didn't let him do that but he's desperate. I think he needs to go to a genetic Dr?! Idk? He lives in a smaller Japanese town. Thank you for replying. Tara
800+ ferritin is way too high. Shame on those doctors or whoever he sees! Iron overload causes many diseases and health conditions.
Besides blood donation, since they are not understanding hemochromatosis, that's a good decision, but there are other things to consider.... check this out:
Sounds like he has your HFE gene and something from his father....
I would look for documentation to give to the Dr.... let them know about your mutation, but that there are other genes involved to cause iron overload.
By the way, is yours H63D?
If I was unable to donate, I would be looking for another way to get rid of high iron..... one can buy the supplies needed online, but I would need help, for sure.
Other items to use to reduce iron:
• stabilized Rice bran (mix 2 tsp in 8 oz water) taken one or two hours away from food. [Bob's Red Mill brand]
I am heterozygous for h63d and I had iron overload, I reached 1200 ferritin and 50% saturation, when I was diagnosed. I inherited the gene from my mother. I bleed every 4 to 6 months, my ferritin is at 30 and the saturation at 34%.
Tara, if someone has hemochromatosis, you have to stay on top of it with phlebotomy or blood donation to reduce iron or to stay below recommended levels You are never cured of hemochromatosis. Where are you located? US or ???
There are various genes involved with hemochromatosis. Ferritin over 300 is too high.
I am passionate about hemochromatosis because 1) my husband's younger brother died fl2.5 years ago from liver complications after years of a health misdiagnosis when it was hemochromatosis all along 2) I've been reducing iron for 23 months now and I'm still not optimal; I've been donating blood about every 56 days since Aug 2016. Plus, I was diagnosed with MS in 1990. Makes me wonder what my iron levels were then. The plaques they said were MS might have been iron deposits! IDK.
Anyway, iron is the most toxic metal. While it's needed, too much is deadly, if not disabling.
A lot to read in the following, but check out each segment. (Hope it's still all there from last year. I should have looked.)
Thank you for all of this info. I'm not sure what gene it is as I went back through my medical charts and found the "type" of mutation they said I had. I am constantly monitored for my iron, trans ferritin, ferritin, you name it they test me for it. I accidentally found out about this as I had Hep C, needle stuck in nursing school, for 25 years and responded to no treatments. I have cirrhosis and splenic vein calcified, pancreatitis and calcified pancreas. I was cured last year, finally, but am monitored all of the time.
I agree that my son needs to stay on top of this. He may need to go to Tokyo?! I live in Colorado and am having a hard time finding any Dr's that take State health insurance. Again, thank you. Tara
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
