8 posts shown.
dustytinker91 said:Abdominal ultrasound came back clear, blood sugar is totally fine too. >, how long have you been dealing with hemochromatosis? I read somewhere that you shouldn't take Vitamin C—like having orange juice right after a meal—because it boosts iron absorption. Better to wait a few hours after eating. They say stress is the biggest trigger, and honestly, I'm constantly stressed out. 😢
They caught high iron levels during my checkup back in 2006, and I finally got the official diagnosis toward the end of 2008.
Right now, like I said, my iron and ferritin levels are both totally normal! 🙂
I'm telling you, do two or three blood draws and you'll be right back in the clear! 🙂
dustytinker91 said:My last ferritin reading before the blood draw was 492. Upper limit is supposedly 150. They told me not to sweat it too much since it can hit over 3000. >, what was your ferritin looking like? And how often are you hitting the clinic for draws once they actually get your iron levels back down to range? Also, curious if you’ve tried tweaking your diet at all to manage the iron levels.
I started out well over 1000—can't remember the exact number. As for phlebotomy, I went exactly three times. It’s been a while since my last one because my labs kept getting better every month. Now both my iron and ferritin are totally normal. Stress was the big trigger for me. I have this super rare gene mutation from my dad, but when I first started, my numbers were insane. Iron was through the roof, ferritin too, my liver tests were a disaster, and my blood sugar was high. Over time, as I worked on managing my stress, everything improved. The only crappy thing I'm left with is diabetes. 😢
Your ferritin is just a bit high. A couple of phlebotomies and you should be fine.
I didn't try fixing it with food. All I know is that avoiding Vitamin C helps! 🙂
Gary Ross6 said:Thanks for getting back to me.
I didn't sign anything. 🤷
I'm just wondering how much time we're looking at after the biopsy—in terms of days or hours?—where there's still a risk of complications popping up.
Thanks.
They sent me home the next day, just before the 24-hour mark. Complications are pretty much non-existent; you might just have some soreness at the site for a few days or maybe a couple of weeks. Just stay easy for at least two weeks—no heavy lifting or straining. 🙂
dustytinker91 said:Might as well jump in here. Just got my results back from a DNA test—turns out I’ve got hemochromatosis. Had my first blood draw today. Honestly? It sucked. Total nightmare. Now I’m looking at getting 300 ml drained every two weeks. I want to hear from anyone who’s actually been dealing with this for a while. It’s hard to wrap my head around the idea of being stuck in a clinic every couple of weeks just to deal with this.
A little advice from someone who's been there.🙂 If I were you, I'd just view the blood draws as a necessary evil. It sucks if you have bad veins, but if they're good, 300 ml goes by in a flash. What was your ferritin level that landed you on a bi-weekly schedule?
Look at it this way: a quick blood draw is way better than swallowing pills or getting constant injections. Eventually, your ferritin will drop, and you won't have to go nearly as often. Hang in there. If you need anything, just ask.
Gary Ross6 said:I’ve finally wrapped up most of my research, and now I’m just waiting to start the phlebotomy sessions. We’re looking at 350 ml once a month to start. My doctor wants to monitor how my ferritin levels respond to that...
I read somewhere that these procedures usually happen in a specialized hematology clinic, but I was over at Mount Sinai yesterday to finalize things, and my gastroenterologist pointed me toward the main building. He mentioned I’d need to coordinate the blood draws down in the transfusion medicine department—it sounded like some sort of basement level facility. I’m not entirely sure why they have it set up that way. I didn't get a chance to ask because the waiting room was absolutely packed, and I didn't want to hold up the staff...
Thanks!
Yeah, they do the draws down in the basement. Don't sweat it. The crew handling the phlebotomy is awesome, and if you have decent veins, they'll grab that 350ml in no time. If you got more questions, just ask! 🙂
What's your ferritin looking like?
Charles Edwards8 said:So, one of the symptoms just got labeled as "impaired glucose tolerance."
It’s pretty rare to see this in younger folks. Usually, it starts popping up once you hit 40.
Since you've been fully worked up and everything, if you're feeling alright, I'd say just let it be.👍
I mean, you could probably list out all the symptoms right now, but honestly, I don't think there's much point unless you're just looking to geek out on the info.😉 Plus, they aren't even that specific. The main thing is just making sure you feel okay.🙂
Look, I'm 30! I have no clue where this came from, unless they overloaded me with iron—which, honestly, I think they did. It's usually hereditary, but nobody in my family deals with this (both my mom and dad were tested). I'm thinking it's definitely linked to those iron infusions. My ferritin was insanely high, but the doctor didn't do anything about it.👎 That was four years ago.
Please, tell me the symptoms!
thanks.
Morning everyone, and thanks for the replies. Not gonna lie, you haven't helped much because I already know everything you mentioned. They've been suspecting hemochromatosis for a year now—constant blood draws, tests, biopsies, the whole nine yards—but they still haven't nailed down a diagnosis. Over this past year, my iron dropped from 47 (it was even higher before) down to 25. My last result was 35, and I honestly have no clue why it's fluctuating like that. It’s only been a month and a half since the 25 reading. Before they caught the high iron, I was actually getting iron infusions because I was running low. 😕 My liver enzymes were also high, but they've dropped, and my ferritin went down too. Honestly, I feel great. My heart ultrasound just showed a minor congenital defect, nothing related to iron damage, and my pituitary, hypothalamus, and liver MRIs all came back fine. A liver biopsy sounds terrifying, but the results showed iron levels in the tissue were within the normal range, though on the higher end.
At the end of the day, I feel awesome. No pain, no issues, and I'm not taking any meds or vitamins, nor have I had any treatment in the last year. 🙏 🙏 🙏 🙏 🙏 🙏
Oh, forgot to mention impaired glucose tolerance—that's the only thing they've actually diagnosed. Just praying to God it goes back to normal.
Realistically, I'm wondering if anyone knows what the actual symptoms of hemochromatosis should be. 😕 😕 😕
Hey everyone, does anyone know anything about this condition or—God forbid—is anyone actually dealing with it right now? There’s barely any info on it online...
Please help!!!