High iron reading in son

[teacake89]

DS15 went to the docs recently for blood tests due to feeling tired and headaches. Got the results today and his iron is at 52. He is booked in for another test next week to see what the levels are after fasting and where to go from there. I am concerned as my MIL has hereditary Haemochromatosis. Does anybody have any experience of this or any advice. DH has told me to stop googling until the results of next week's tests, but my nerves are fraught with worry.

Bumping to see if there is any replies 🤞

There is hereditary haemochromatosis in my family and my dh had high ferritin reading at his 'well man 40' check.
They called him back, did a HH test and it was negative but have now referred him for a liver scan (as high iron can be caused by fatty liver disease)

If I recall, you need both parents to be Carriers or one parent to be a sufferer to pass to child. Even if child has the full gene, they don't always get the condition.
There is no cure but the treatment is 'bleeding', at first, a couple of times a month, then every six months or so to remove excess iron build up. The test takes 3 weeks or so to come back, if he's positive then you and his dad will need tested to see if you have it, plus any other children you have.

Avoid high iron foods or foods which promote iron absorbsion, eg. Don't drink orange juice with meals, avoid fortified cereals etc.

Obviously dh is not a sufferer so we needed no further checks. He may be a carrier though. We will monitor the children as I may be too? To be honest, I'm more concerned about the non alcoholic fatty liver disease alternative that I was about the haemochromatosis. Dh is not overweight but his diet is shit and I think he will be very sceptical to make dietary changes, whereas he couldn't have argued really with the HH diagnosis,

Sorry, it's in Dh's family - his dad is a carrier and his aunt and uncle are both 'sufferers'

Thanks for your reply @thenewaveragebear1983. Am def going to do some research and try and overhaul DS diet. It's
complicated as his bloodwork also showed he is low in folic acid so he has been prescribed tablets for four months. The fact mil has haemochromatosis has me worried about DS and my other two children. She got diagnosed years ago and I had never gave it much thought until DS blood came back today. Just stressing over what the future holds for him tbh and how he will cope if he had to get transfusions frequently ( he has ASD and is not good with needles.) Sorry for rambling - just needed to vent and DH doesn't want to talk about it until next weeks test results!

It's not transfusions so much as plebotomy, like giving blood. My dh is terrified of needles, he fainted when they took the blood for the HH test. He considered some hypno if he ended up having to do it regularly.

I think the key is you have caught it early (if indeed he's positive). HH is dangerous when iron builds up in the organs, so the earlier you find out the less likely this is. Personally I would do some reading as the nhs direct info was very thorough and informative. You will probably find you worry less if you know more about it

Thank you, you have helped put my mind at ease. I didn't realise the disorder was as common as it is in the UK! Hope your DH's liver scan goes ok too. My own DH has a crap diet and I know it's hard to get them to change it x

No worries, happy to help. We were quite worried at first because dh had no symptoms, it just landed on us when he went for the routine 40 check. Then we were worried about the children. So I completely understand!

To be a Carrier (eg 1 half of the gene) is apparently really common, 1 in 8 people carry it. So it's not rare by any means.

Hopefully your ds test will come back negative please do post to let me know!

It's in our family - I don't have it, my dad does. He has regular venesections where they take blood from him. Before he was diagnosed he was a blood donor. He's 80 now and it's not really been an issue for him.

My DH (in his mid 40s) has this. He now manages it by donating blood every three months and that keeps it under control (and its a good thing to do as well). But to have the condition as an adult, you have iron readings well into the hundreds - for an adult, 56 would be within acceptable levels. And I didn't think you could get it as a child. If you are anywhere near London, my husband is treated at the Clinical Haematology Department at University College Hospital, who are outstanding.

Thanks everyone, it is reassuring to hear the condition is manageable with the right treatment. Just hate the thought of DS suffering. @summerinsun we are in NI, but thank you for the recommendation. Apparently there is a thing called juvenile haemochromatosis which affects children. The 52 I think may have been a precentage of something - it was hard to talk to the doctor on the phone earlier about it as DS was nearby and could hear us.
As I said earlier, I wouldn't usually worry so much before the results of the test apart from the fact mil has it and it is hereditary. I am praying the tests come back negative!