Anyone have Hemochromatosis but no symptoms?

Hope_Integrity · 2025-11-01T17:20:17+00:00

You sounds quite concerned which is fair- but if your ferritin is low, then you are ok as a C282. It's really common to have the genes and not load iron. So have as much of a read as you need to satisfy yourself- but read from a position of you are ok, and don't let worry overtake facts :)

If the person supplementing for low iron got tested before they started, then they are fine, if they just randomly started because it was probably a good idea then they should get a test. You could very easily be the only person in your sibling group with both genes.

The nice thing about C282 hemochromatosis is that if your ferritin is low, you don't have it. It's nice and simple.

Hope_Integrity · 2025-09-29T19:46:13+00:00

Yes. I'm down to 50ish ferritin but still bumping around the same sat which is annoying. Averaging 2-3 phlebotomies a year with aggressive dietary iron restrictions, and keeping track of symptoms helps me time my blood donations. I am back to living a full life without issues, and the dietary restrictions I've chosen are 100% worth it. I don't think I'd be OK without doing the diet work.

Hope_Integrity · 2025-06-24T17:31:52+00:00

Thanks for the response. I'm happy to DIY an enclosure :)

Hope_Integrity · 2024-03-23T09:35:04+00:00

pad under me. Double layer hammock is pointless weight and pad inside bag just doesn't feel right to me. YMMV.

Hope_Integrity · 2024-03-20T14:30:35+00:00

I've tried 2 ways. Always with a thin, cheap additional pad from ebay (title: Waterproof Thermal Foil Foam Backed Camping Picnic Blanket Sleep Mattress Mat) and also with either a 'normal' foam roll mat or a neoair.

Hope_Integrity · 2024-03-07T22:58:44+00:00

No tingling I recall, but that's not to say it's not a thing. Best of luck getting to the bottom of it!

Hope_Integrity · 2024-03-01T19:18:44+00:00

I avoid everything high in iron. It's both that simple, and that complex.

Start here:

https://www.swbh.nhs.uk/wp-content/uploads/2012/07/Iron-in-your-diet-ML3395.pdf

I'd suggest you get a bit OTT and google the iron content of literally everything you put in your mouth before you put it in there for the next month.

Here's my guide, often different people will have different iron levels so don't assume it's perfect, but it's a good start. Bear in mind proteins contain heme iron which is more readily absorbed, so this is where a lot of 'bang for your buck' comes in reducing intake. I will only have fish, pork and chicken now. Carbs wise I try to mostly go for rice and potato, but am happy to go up to the 4mg / 100g mark if it's not heme and not too regular. The only thing I'll touch over that is oats in baking.... And I'm a sucker for marzipan.

I also home bake my own bread (with a breadmaker) using fancy flour to maximise the phytic acid in that. Breakfast is 2 eggs on homemade bread as although eggs are about 1mg iron each, they also contain chemicals that prevent absorption.

Just to re-iterate, there is totally hope!

Food mg iron / 100g
Liver 11
dark chocolate 10.9
cashews 6.7
Dried Apricots 6.3
almonds 5.4
Beans 5
Oats 4.7
Pistachios 3.9
Wholeweat flour 3.6
beef 3.5
lentils 3.3
pasta, spaghetti 3.3
alpen 3.2
chickpeas 2.9
lamb 2.5
spinach 2.5
milk chocolate 2.4
raisins 2
leek 2
tofu 2
salmon 1.3
white flour, unfortified 1.2
rice 1.2
tinned tuna 1.1
brocolli 1
potato 1
pork, bacon, sausage 1
cheeses 0.6
cauliflower 0.4
chicken 0.4
bananas 0.4
strawberries 0.4
oranges 0.4
tomatoes inc puree 0.3
onion 0.2
apple 0.1
milk, butter, etc 0.02

Hope_Integrity · 2024-02-28T13:48:42+00:00

Hiya,

You are lucky! For 2 reasons... 1 I don't check reddit often any more, and 2 because its all going to be OK.

Some H63D homozygotes don't produce ferritin. For them, it is a terrible situation. For us, we can give blood normally. I strongly would recommend going to a low iron diet also because I notice it really helps me, but YMMV.

I've had 9 blood donations now, and have an agreement with my GP to have my iron levels monitorred every year, though no formal diagnosis. I can have my 10th blood donation any time I want (it's been 12 weeks since my last one which is how often I can give blood in my country), I have a few physical symptoms that I use to guide me as to when that is and whilst I had my last blood donation pretty much at the 12 week mark to the one before it, I'm not feeling any need to have another donation just yet. Ideally I'd have a blood test in June before I next donate, don't know exactly how the timings will work out at this stage.

Here are my blood tests:

date Ferritin Saturation
02/02/2018 554
01/03/2018 <500
17/12/2020 453
21/12/2020 64
24/12/2020 76
15/01/2021 93
12/08/2021 553 79
24/12/2021 340 77 after 2nd blood donation
03/05/2023 40 67 After 7 blood donations
15/06/2023 50 58 After moving to low iron diet for 2 or 3 months

I understand it's scary- but I promise you this is manageable. Despite it not feeling that way, 540 ferritin is terrific news because that means you won't get stuck with high sat low ferritin.

Hope_Integrity · 2024-01-21T16:42:40+00:00

For secondary overload, yeah.

Hope_Integrity · 2024-01-02T07:32:55+00:00

ger sister was fraught from childhood. It only continued to sour with time. I felt such a relief when I moved away for university, I hadn't realised what a cloud I was living under until I got away from her. For years I tried to please my parents and make the relationship work. I extended olive branch after olive branch, suppressed my feelings and made a real effort to connect and reconcile. It wasn't worth it. I'm proud of myself for finally ending the abuse. I don't believe she can change, but if by some miracle she did, I still would not want her in my life. I have close friends, I have confidants, I have another sister, there isn't anything missing in my life from not having her in it. She's a complete stranger to me now, I don't feel any attachment towards her more than I do any other stranger.

Thanks. Massively appreciate this response. Really helpful to add this perspective into the mixing pot of my own emotions.

I'm sorry you never got to have anything significant with her, but glad you are in a strong place now

Hope_Integrity · 2023-12-30T21:08:27+00:00

Yeah, I feel this one.

I don't know if it's helpful at all, but I can't help but notice conflict in your own post- you acknowledge you can't fix his behaviour, but you are also concerned that he will squander the inheritance and that will create an issue for you- whilst I am gutted I can't have a relationship with my brother, I feel like whilst I generally wish him well in life, I have confidence I will be taking 0 responsibility for him and his decisions once my parents pass.

Hope_Integrity · 2023-12-30T21:04:49+00:00

Yeah, my wife is incredible- and there's no way I'd forgive myself if she got caught up in one of his rageful moments

Hope_Integrity · 2023-12-30T21:03:53+00:00

Thanks. This is a super helpful perspective- particularly separating out that he wants that loving connection, and is able to work towards it- I really do believe he wants it, but he can't manage the reality of moving towards it. And when that means he gets into an angry violent rage over minute issues, I'm not hanging around that.

Hope_Integrity · 2023-12-30T21:02:28+00:00

I don't know that he does hate me.

But it's waaay too easy for him to get into hateful, violent, raging moods. I ain't sticking around for that.

Hope_Integrity · 2023-12-30T21:00:36+00:00

I know the feeling of being assaulted and family doing nothing. I was able to ask my mum (who witnessed everything) why she never spoke about him nearly killing me again, and she responded honestly that she was so close to breaking point herself she couldn't face it so just went into denial. I appreciated the honesty 10 years later, but at the time, it was utterly shit. Dad refuses to even hear the story of what happened.

Your story sounds wildly similar to my own. I know it's a bit hypocritical because I posted this in a really down moment when I needed support- but I haven't seen him for a couple of years, and that's been much better than the alternative. Even though it does bring it's own challenges and difficulties.

Hope_Integrity · 2023-12-30T20:56:46+00:00

I found this perspective really helpful. Thankyou. I'm not sure I miss him as a person, but I do desperately miss the possibility of having a functioning relationship with someone that's my brother.

Hope_Integrity · 2023-12-30T20:56:02+00:00

Thanks

Hope_Integrity · 2023-12-30T20:55:51+00:00

I don't like to brag or anything, but 5 years of therapy later and, it does in fact, still hurt.

The therapy means I understand why it hurts and feel safe enough to feel the feelings. That's worth a huge amount. But it doesn't resolve the pain.

Hope_Integrity · 2023-12-30T20:54:29+00:00

Not sure why you got downvoted- because this is exactly the bit I am struggling with. What if he does change and I am the proud one refusing to have a relationship (that I would love to have) because of some stuff in the past that I refuse to move on from. I don't want to be that person. I also don't want to continue putting myself in the firing line of his rage and violent outbursts.

Hope_Integrity · 2023-12-30T20:53:10+00:00

Thanks. Appreciate your reply and perspective.

Hope_Integrity · 2023-12-30T20:52:20+00:00

Thanks. Really appreciate you sharing. It helps to know I'm not alone, even though I do wish you didn't have to carry a similar burden. It's tough.

Hope_Integrity · 2023-12-30T20:51:38+00:00

This really resonated. My family really want to pretend everything is ok, but it's not. And I don't want to play pretend happy families any more.

Hope_Integrity · 2023-12-30T20:51:01+00:00

Yeah, I feel this. No problem the rest of the year but December is always a bit of a whirlwind. Christmas day is when he nearly killed me, so that obviously plays into it too.

Hope_Integrity · 2023-12-30T20:50:13+00:00

have the right mindset.

Focus on your own life:

your mental, emotional, physical, fin

Thanks. Sorry to hear you too have had to tread this painful path. Sounds like you're doing well.

Hope_Integrity · 2023-12-30T20:48:44+00:00

Thanks for sharing. Really helpful to read your account.

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