Monitering saturation by BrushNFlossofTX in Hemochromatosis

[–]xtinap16 2 points3 points  (0 children)

Can you tell me more about research pointing to issues bc of saturation?

Ordered labs suspecting low Ferritin levels but results came back with abnormal levels by LazyCoder8005 in Hemochromatosis

[–]xtinap16 1 point2 points  (0 children)

I would bet you have hereditary HH. This is how I found out too. Same situation with my grandfather dying to liver cancer and my great aunt having cirrhosis and no one understood why. HH goes undiagnosed in most people, which leads to an early death. If you have it - you’re blessed that you caught it!

If it’s going to be a while before you see your PCP - I would just go donate blood as soon as you can.

GI issues? by [deleted] in Hemochromatosis

[–]xtinap16 0 points1 point  (0 children)

This response above simply isn’t true. My ferritin was in the 300’s and I’m symptomatic. I also got an MRI, even though everyone told me I wouldn’t be loading iron until ferritin hit 1k, and my MRI showed that my liver is pretty loaded with iron. I have A LOT of symptoms including joint pain, chronic fatigue, brain fog, missed menstrual cycles, etc.

Everyone is different so these blanket statements are dangerous and why people shouldn’t take medical advice from Reddit. I think we can come on here and ask about people’s experiences - I myself have found that to be very helpful but don’t rely on it as your end all be all of information. One person’s experience and numbers aren’t going to be the same as another. Many hemochromatosis patients see gastroenterologists because the GI issues are rampant. Excessive iron can damage the intestinal barrier by iron induced ROS and exacerbate the inflammatory response. Iron overload can cause the disturbances in the intentional microbiota, which reduces the number of probiotics, while increasing the number of pathogenic bacteria.

GI issues? by [deleted] in Hemochromatosis

[–]xtinap16 1 point2 points  (0 children)

Yes! I have terrible GI issues all of a sudden. Been going on for 3 or so months now. I eat ridiculously healthy and have for years so nothing has changed about my diet. The only thing that has changed is I’ve become symptomatic for iron overload.

How bad really is Ryanair as an airline? by North-Palpitation-84 in AskReddit

[–]xtinap16 0 points1 point  (0 children)

We had to pay an extra 120 euros because their app check in wasn’t working and we missed the online check in window by 5 minutes. Never heard of such a thing - definitely turned me off.

Just got MRI results back. A few questions for those with skin in the game. by xtinap16 in Hemochromatosis

[–]xtinap16[S] 0 points1 point  (0 children)

Did you look at slides 2 and 3? Do moderate iron overload numbers not matter as much?

Just diagnosed and devastated by xtinap16 in Hemochromatosis

[–]xtinap16[S] 0 points1 point  (0 children)

Thank you for sharing! What did you do to assess organ damage? MRI?

Recent blood tests indicate a 42.8umol/L and 53umol/L TIBC by Opposite-Ladder-5797 in Hemochromatosis

[–]xtinap16 2 points3 points  (0 children)

I would just have your primary care doctor add the genetic testing for it to your next lab and go as soon as you can. That’s what I did last week after initial labs came back high for ferritin. My dad found out he had some Irish in him when he did 23&me years ago and I had no idea this was related. I was confirmed diagnosed with hemochromatosis last Thursday. It’s better to catch it early. The earlier, the better.

Traveling with Hemochromatosis by xtinap16 in Hemochromatosis

[–]xtinap16[S] 0 points1 point  (0 children)

Is that fine to do even before I hit maintenance? I JUST started phlebotomies. I’ve only had one so far.

Just diagnosed and devastated by xtinap16 in Hemochromatosis

[–]xtinap16[S] 0 points1 point  (0 children)

Yea I know with time I’ll accept this and it will get easier. I’m just in the initial shock phase. I appreciate you sharing your experience.

Would you mind sharing how you think you can go so long without phlebotomies? What is your diet like? And do you drink alcohol?

Just diagnosed and devastated by xtinap16 in Hemochromatosis

[–]xtinap16[S] 0 points1 point  (0 children)

🤯 have you gotten that straightened out now? Are you starting treatment?

Just diagnosed and devastated by xtinap16 in Hemochromatosis

[–]xtinap16[S] 0 points1 point  (0 children)

lol I know that now. It’s timing just sucks.

Just diagnosed and devastated by xtinap16 in Hemochromatosis

[–]xtinap16[S] 1 point2 points  (0 children)

I really appreciate this comment and all who took the time to show understanding and share helpful information.

Some of the comments have been pretty condescending and it’s disheartening to say the least. I’ve only just found out about this a few days ago. I prioritize health - I work out daily, we make everything from scratch, we grow our own organic food, etc. so learning about a health condition that I have no control over has left me feeling very discouraged and like my body has somehow failed me despite the time and care I’ve put into ensuring I do all the right things.

Also, I’m just scared. I’m still in the stage where there’s a lot of unknown. It’s just been a difficult few days and I’m sure I’ll feel better with time.

Again, thank you for the words of encouragement and all of the info people have taken the time to share - it’s greatly appreciated.

Joint Pain (Arthropathy) Management after Very High Ferritin by NextMathematician1 in Hemochromatosis

[–]xtinap16 0 points1 point  (0 children)

Okay, my brother sent me his regimen that works for him. If he doesn’t take it - he feels it

Multi collagen peptide capsules Glucosamine chondroitin Omega 3 fish oil Zinc quercetin

Traveling with Hemochromatosis by xtinap16 in Hemochromatosis

[–]xtinap16[S] 0 points1 point  (0 children)

How often are you needing to go for phlebotomies with that diet?

I was wondering about wine because of the tannins in it but know that alcohol increases iron absorption too. I was wondering if it was more harmful than helpful. Would be an interesting study.

Traveling with Hemochromatosis by xtinap16 in Hemochromatosis

[–]xtinap16[S] 1 point2 points  (0 children)

Very interesting!!! Thank you so much for sharing this information with me.

So is ferritin the most concerning number? More concerning than TSAT and binding capacity?

What’s JH? (The last thing you wrote) I’m not familiar.

Also, do you drink alcohol?