Haemochromatosis and saturation levels
Posted , 4 users are following.
Hi. Found out I am compound heterozygous and have the c282y and h63d.
I have extreme tiredness and sore joints especially so in my hands and feet.
I have been referred for venesection and am having the second treatment today.My confusion is that my iron levels are 117 but serum saturation is 85 percent.
other people's iron seems to be way way higher than this so is there some significance with the saturation levels?
I feel much more poorly than the iron levels suggest. I also have a bit of blurred vision, slight itching in my neck and head and also been diagnosed with vitamin d deficiency. Any thoughts anyone ?
1 like, 4 replies
haircrazydaisy lisa96705
Posted
You have the same gene mutation as me. I think measures vary according to country. I suppose it may be like measuring length in mms as opposed to cms - the result will look different . My levels before maintenance were similar to yours. My consultant wanted to keep saturation level below 45%. If I were you, I would just be happy that you have been diagnosed and that you will be getting treatment. We are the lucky ones. Your symptoms are similar to mine, too. Those should dramatically improve after venesection. Are you going to take Vitamin D supplements? Search previous posts & you will find lots of wonderful advice on vitamins, symptoms etc ... Good luck ?
lisa96705 haircrazydaisy
Posted
Thanks for your reply..guess I'm just a bit impatient cos the tiredness and joint pain is debilitated at times, but your right...I actually felt relief when I was diagnosed. Had second vs yesterday but don't feel any different yet.....too early I'm sure to notice anything.
yes I'm taking vitamin d supplements at the moment. Been prescribed 20,000iu 3 x week for 5 weeks then have to stay on 800iu a day for 5 months then repeat bloods.
Good luck to you too.
haircrazydaisy lisa96705
Posted
It's a strange feeling when you get the diagnosis. I remember feeling relieved that I wasn't a hypochondriac & that the symptoms could all be explained but also went into a panic over food. I had always eaten sensibly, as we are told - protein, veg & fruit. Suddenly, for those of us with HH, that isn't so good after all. It's a strange disorder that is almost ignored by professionals but very real. If you are tired, iron is always seen as the answer, not the cause. I won't even get started on the amount of foods with added iron! Hope you feel some relief soon :-)
allaroundanne lisa96705
Posted
You do need to get that saturation down below 45%. Your feelings of fatigue may go away, or at least improve then. The joint pains aren't related to your iron levels. Unfortunately the hemochromatosis gene has a tag-along arthritis gene that causes an inflammatory type of arthritis sort of like rheumatoid arthritis. In fact, there is a clinical trial going on in Rennes, France testing a rheumatoid drug on some hemachromatosis arthritis patients to see if it alleviates the pain and stops the progression of the arthritis. I found a supplement, egg shell membrane that actually works in the same way as this drug and doesn't have all the horrible side effects that all the rheumatoid drugs do ( they really kill your immune system making you susceptible to everything including TB, cancer, pneumonia). I have horrible arthritis in my spine. But I also end up with problems with my cholesterol, blood pressure and blood lipids if I let my sat go above 45%. So, keeping that sat down is important not just in how you feel, those iron levels effect so much about your metabolism. Keep up with your venesections!