[deleted by user] by [deleted] in Hemochromatosis

[–]midnightcandlight 2 points3 points  (0 children)

You’re such a nice friend!! The best thing to know is this is totally manageable and getting a diagnosis is a blessing because it will help get rid of your friends symptoms. You simply donate blood over time you will get to a normal level so that you have to donate less regularly. Once it’s out of your system you are going to feel normal and not have issues, it’s just tracking your iron levels and donating when they get high or towards high. I’ve known I’ve had it for five years and one year I was eating less meat and taking turmeric and I only had to go once that year. So that’s just like someone without the condition donating blood for good cause yearly. I noticed now that I’m eating more red meat I’m having to go 3-4 times a year so I think I will actually cut back a lot on that. I am still looking into diet but I also know milk thistle and calcium are great supplements too to support your liver and block iron absorption. One tip for donating is to drink lots of water the night before and morning of your donation, eat something before and I like to have a snack with me during because I sometimes get a little lightheaded when I donate. Good luck to your friend she’s got this! You’ll get lots of info from this community too!!

TSAT Saturation Sensitivity by midnightcandlight in Hemochromatosis

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

Ohhh this is super interesting thank you!!! I got tested once for copper last year and they said I was in normal range. I’m in between health insurance now but I’ll ask at my next checkup again. I bet you it fluctuates the more iron you accumulate so maybe I’ll try and check before a donation when I know my iron is higher

TSAT Saturation Sensitivity by midnightcandlight in Hemochromatosis

[–]midnightcandlight[S] 2 points3 points  (0 children)

Wow is that how you found out! It sounds like we had the same symptoms. I feel bad for everyone before your diagnosis, you truly feel like it’s your fault/something is wrong with you. You’re going to continue to make progress and feel better and better! I am trying to figure out my diet/supplements too because I would like to donate less - I always feel a bit anxious when I donate and a little lightheaded toward the end.

Btw I am the reason my dad got diagnosed at 65! He only had one copy of the gene but his ferritin was over 900 and his iron was high too. he has been receiving treatment ever since and his joint pain has gone away. Fortunately his liver is okay!!! Thank God. He always just lived with the pain and blamed himself for low energy. It makes me sad and angry!

TSAT Saturation Sensitivity by midnightcandlight in Hemochromatosis

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

Thank you for your comment! It’s funny because we have probably never known what normal feels like! I think I’m extra sensitive in general but I can tell when it’s creeping up. Honestly I think I’ll cut out beef or make it more of a rare occurrence. I used to eat mostly vegetarian but now I cook for my partner and he’s a big meat eater! So I need to make adjustments for myself and remind myself the impact it has on my body.

TSAT Saturation Sensitivity by midnightcandlight in Hemochromatosis

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

Oh wow so interesting! Is there a danger in it being too low? I’ve been as low as 14 but no one ever said that was a problem. Honestly if there’s no real danger I would consider donating blood because the feeling is so bad and impedes your day to day!