haemochromatosis and genetic link

I have just been to a family party at the weekend, and met 2 of my aunties I haven't seen for years. They are my Mum's cousins. One of them has an underactive thyroid diagnosed at 50, and the other one who is younger has only just been diagnosed with haemochromatosis. Their Mum had an underactive thyroid. I have looked it up and know it is all linked to low vitamin b12 and low vitamin d, and people with hashimoto's. I have hashi's. and low vitamin b12, and low vitamin D, which I am being treated for. My question is, as they have told me to get tested for haemochromatosis, is it passed down through the generations. Has anyone got any experience of this condition, and do I need to get my children, who are now young adults tested. I am going to be contacting my Aunties, and telling them to get their vitamin b12, and vitamin d levels tested. I also knew straight away when I saw one of my Aunts, that she had a thyroid condition,

before she told me, as her hair was very thin on the top.

4 Replies

  • ....always find it hard when we non-medics can see the thyroid issues in someone and yet the GP's cannot ! We have just had a guy arrive who is renting our Guest House for a year - here in Crete - and within minutes of meeting him I could sense he had a problem with the dreaded T. Over lunch later all was revealed as he told us his story. Was over - now under. Off to Draculas Den in the morning for blood tests as he has arrived without his medication !!

    Good that your aunts have you to help them with their tests. Sorry do not have experience with haemochromatosis - but am sure someone will be along soon.

    It's good to keep an eye on your children - as we know so well thyroid illness creeps up on us without us realising. Once I was diagnosed I was told by the Endo here to have the girls checked....

    Wishing you well...........

  • My brother was recently diagnosed with haemochromatosis @ 64 years of age. Strange that it took so long when he's been having blood tests for years following heart disease and before that he gave blood for decades - and his ferritin was VERY high indeed. His thyroid is OK, it's me who was hyper and is now hypo with thinning hair (grrr!).

    He is being treated by blood letting, that's the routine and it can take a long time to get the level down to normal range, obviously depending on how high it was in the first place and how you respond.

    He was told to tell his siblings to get tested, I haven't yet, am overdue for thyroid testing anyway so I'll get it done then.

    I don't think it's anything to be very concerned about as long as you respond to treatment, but there could nasty consequences if you don't get treated - my brother is very arthriticky/gouty nowadays.

  • I have read that a lot of people don't find out they have it until later in life. It's a bit like the low vitamin B12, a lot of people don't find out they have that, until problems in their 60's. My Auntie's sister doesn't have haemochromatosis, but they still said I need to be tested. In some women they don't find out they have it until they start the change. I didn't get enough time to find out from my Auntie what her symptoms were, and how she found out she had it. I will also ask to be tested at my next thyroid/vit B12 blood test, that I have done every 6 months now. Good luck with yours.

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