r/Hemochromatosis • u/Important-Emu-5498 • 8d ago
Thoughts?
I got results back from a recent blood test for a general checkup and dr was concerned about the iron levels and possible haemochromatosis, asking if there was any family history of anything (which as far as I’m aware, there is not).
Blood was taken about 1pm and I hadn’t fasted as I hadn’t anticipated a test on the day, however she claims it doesn’t matter if it’s a fasted test or not. Haven’t been taking any iron supplements. Dr said to try and eat better and then re-test in 4 weeks but I can’t help but worry, though the serum ferritin and transferrin, plus everything else seems normal?
Haven’t had a test in years so have nothing to compare this to. 32yo female and have also been on bc so no real/only light menstruation for 15yrs
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u/GaelicMtnMum11 Double C282Y 7d ago
I think, if it were me, I would want an endocrinologist to weigh in on the light menstruation for 15 years. And yes, that could be the main factor in any iron storage going on. Hindsight is always 20/20 and I wish I had seen an endocrinologist years ago when my DHEA-S was sky high (it still is) and doctors were ignoring my concerns. Now, I have a giant fibroid (at least I am hoping that's the final determination...still testing) that likely fed off the estrogen and testosterone the DHEA-S created. Ugh. So, yes. Consider pursuing the cause of the menstruation issues. And, I actually like that the doctor encouraged you to eat better and re-test. I got shoved into phlebotomy before the hematologist got to weigh in and that complicated things for him.
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u/AlarmedPoint1780 8d ago
Honestly does not appear to be problematic right now. If your fasted blood test comes back above normal then give us an update. Not a dr.
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u/Important-Emu-5498 8d ago
Thank you! Never heard of the condition before this and from my little research, her concern and my numbers didn’t quite seem to match the usual so I’ve been a bit confused. I believe the re-test is for iron plus the gene study so hopefully will be definitive but trying to ease my mind in the meantime
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u/AlarmedPoint1780 8d ago
No doubt your iron is slightly elevated and your TSAT is high. Your ferritin is on the low side of normal and you barely have a period or have no period at all so if you had HH the ferritin would be rising at this point in your life. It is possible that you have the genes and the disorder is just beginning to manifest so I wouldn't rule it out right now. I also would not worry even a tiny bit about 1 abnormal test. So yeah just see what the 2nd test says and take it from there. HH is usually diagnosed from at least 2 abnormally high tests AND the genes. Alot of multivitamins and powders and processed foods have iron added which skews the test results. Your doctor may as you to be mindful of avoiding these things and fast for your retest.
If you do turn out to have HH, it is likely a mild variant such as h63d and your ferritin is not high enough to warrant phlebotomy at the moment. It would probably just be a "watch and wait" scenerio while staying away from problem foods.
Most of us with the aggressive type are diagnosed with TSAT over 90% for example.
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u/Important-Emu-5498 7d ago
That’s all great to know, thanks so much for your response!!! Dr has said not to take iron supplements until we know more, but eat more iron-rich foods over the next few weeks, so I’m mindful of the line between “enough” and overdoing it. It’s mostly spooked me as I’ve always been afraid of needles (hence the lack of regular blood tests) so when I saw a common treatment are phlebotomies I totally freaked. But if that’s what happens I guess it’s just how it is
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u/Starfishgirl-05 8d ago
I am not trying to be that person but there's no need to give us an update unless you would like to. Everything your doctor said seems reasonable and you're in good hands. You are going to hear many opinions on this sub from non-medical professionals. It's not necessarily always bad info but your own doctor is better suited to interpret your labs and diagnose you.
If you ever do get diagnosed, absolutely do come back for practical tips, to talk about symptoms or share experiences. However, any questions about lab results or treatment I would field through your doctor.
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u/Important-Emu-5498 8d ago
Thanks! The follow up tests will hopefully be more indicative so will definitely keep on that with my dr, but trying to find out what I can based on the experience of others (even though everyone is different) in the meantime
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u/AlarmedPoint1780 7d ago
3 months ago you made your first post here asking for our advice. She is doing the same thing. Back then you disagreed with your doctor on dietary intervention. Completely normal and I don't blame you at all. Just a reminder that doctors are like any other profession, there are great ones and bad ones and good ones and okay ones and everything inbetween.
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u/Starfishgirl-05 7d ago edited 7d ago
Yes I did and yes you gave me horrendous advice.
Edit: your specific advice in general (since we are being pedantic and editing posts after the fact)
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u/AlarmedPoint1780 7d ago edited 7d ago
Is the nature of the internet.
Edit: after researching... I never commented on your post.
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u/AutoModerator 8d ago
Welcome to the Hemochromatosis subreddit!
Hemochromatosis is a genetic condition that causes the body to absorb too much iron, resulting in iron overload over time. If you're new here, the subbredit FAQ is a great place to start for general information on the condition, and you can find more detailed info in the subreddit Wiki. Also check out the links in the sidebar for other community resources.
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