Hemochromatosis

[IllBeAtTheBarIfYouNeedMe]

Does anyone have any experience of this? I went for blood test for a weird rash I had and my hb levels were high. My hb levels have always been on the high side so the dr sent me to be tested for hemochromatosis. The results are back but they wouldn’t give me them over the phone, I have to wait until Monday for the dr to call me.

I’ve googled so I know the basics of the condition but I was wondering if anyone had personal experience they wouldn’t mind sharing with me whilst I wait out the weekend.

My sister has this and she goes every month or two to have a pint of blood taken out. Just like giving blood. Apart from that and regular hospital appointments and blood tests she carries on as normal. She is otherwise well. Good luck with it all next week.

Thank you threads. That’s very reassuring to hear. Did you have to go for testing?

colleague has this, about 58 yo, it runs in his family. He says it had lifelong impacts before it got discovered. You are very lucky if it's been detected when you're relatively young. He's got some other health conditions going on, but I understand the doctors say not linked.

Yes I had genetic testing and I'm not affected so I was lucky.

Don't they test ferritin for that?

My dad has it, I've yet to be tested. He's currently in maintenance, which means he has to blood let less often. I've heard it called the Celtic Curse... do you have Celtic blood?
Other symptoms include lethargy, lack of sex drive. There is a really good support group on Facebook if you are on there? Haemochromotosis support group I think it's called. They really are a collective font of knowledge and understanding

My colleague has it, as does his dad.

He goes every few months to have his blood let. He is quite blotchy, I don't know if that's a symptom.

My dad has it. Discovered it about 15 years ago. He has type 2 diabetes so they wanted to do further testing as he had a few other issues and it turned out he had haemachromatosis. His iron levels have now been stable for a while.

Since getting treated, his family have all be checked - a few brothers and sisters have it (and a lot worse than him!).

It’s easily managed with blood tests etc and we can tell when he’s due a blood test as his moods change and he gets sleepy a lot easier. He’s not yet 60 and it appears to be slowing down now it’s managed.

There’s a higher rate of it amongst certain backgrounds-and we fit that bracket. None of us(his kids) have it.

It’s actually quite prevalent now I believe, people just never got checked for it.

You have my sympathies. When my dad was first diagnosed it was claimed women couldn't get it by his medical team. After my own health started failing I finally had tests done and won the jackpot in that I not only have my dads rare defective gene but also inherited a more common defect from my mom (both causing hemochromatosis).

On the plus side it is the most common genetic condition in the USA, there is a wealth of information online now about it.

Any questions or need any sign posts PM me. :)

Thank you everyone. It is really reassuring to hear that it is very manageable.

To answer a few questions:

This round of tests were specifically looking at my ferritin, iron and transferrin levels.

Yes to Celtic bloodline. Both dgf’s

I’m kind of kicking myself a bit as I’ve known since my ds was a year old that I had naturally had really high hb (he’s 14 now) as I used to work for the blood service and during a really rough patch where I looked and felt like utter crap, the dr on session tested me suspecting anaemia and we were both shocked when it was higher then normal for a man. I probably should have followed it up with my dr then but I was just too exhausted.

It will be interesting to see, if I do have it and am treated with phlebotomy, if I lose this permanent feeling of exhaustion. I just thought that this is how your supposed to feel being an adult with dc even though my dc are all secondary school age now.

I’ll definitely check out the Facebook group. Thanks for the recommendation.

What happens with women is that because they have periods the symptoms sometimes appear later.

My grandpa had it, misdiagnosed as arthritis, he was about 75 when he received the correct diagnosis and was controlled by blood letting.

I’ve read that but I have the mirena. I haven’t had a proper period for about 18mths: that probably hasn’t helped but I luffs my mirena

They look at 2 tests- ferritin and transferrin saturates. If the transferrin saturates are over a certain percent, you can go for a genetic test to see if your a carrier. I missed out by 2.5% on the test but my ferritin has never caused them alarm. I go regularly for blood tests so the nurse said that when I go to put my name down for the transferrin saturates test. My first cousins in one family mostly have it.