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Does anyone have compound version of C282Y/S65C. I have lower iron levels but still feel like I got run over by a truck most mornings. Any experiences with the compound versions?
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lornacs matts
Posted
Hi!
I've got Compound Heterozygous too and feels like I've been hit too.
I'm still waiting for some more tests as my iron levels aren't that high too.
Have you seen any specialists or scans to check your liver? Apparently mine is fine.
sheryl37154 matts
Posted
I am homozygous C282Y, my husband is homozygous H63D, and of course, our son is compound Heterozygous C282Y/H63D. I had a 9 year delay of severe symptoms before my hips broke up and I was diagnosed with a fair bit of other damage. Everyday I described myself as feeling like I have been run over by a truck, and I was staggering and slurring with fatigue. No google back then! Just letting you know where I am coming from.
After 21 years, the fatigue and body pain has never completely left me.
S65C is not given much credence as far as haemochromatosis goes, but I believe in everyone being different. You don't say what your ferritin level is or if you are having vx. Even if your ferritin is not overly high, perhaps a blood donation every 3 months will help you. Afterall many more people who do NOT have haemochromatosis donate blood on a regular basis. If your dr has not ordered it, do not mention the H word.
What is your TS%? A high TS% seems to cause more grief with GH. What is your MCV? Are all your other bloods ok, eg. liver, thyroid, pituitary gland hormones, glucose, etc. ? Is your haemoglobin in good shape? Liver function tests do not reveal if you have fatty liver - you need a scan for that, in case you have that problem.
Did you happen to have Epstein Barr syndrome at some time? This seems to make GH symptoms a bit harder to get on with. Both my son and I had it at different times in our lives. Our son's GH is much less aggressive than mine but he got slack with his vx program, and his lifestyle, and now has diabetes.
I had a breakthrough when I started taking 100mg of aspirin per day to thin my blood which had become hard to venesect. As a side effect, I started feeling lighter and could walk faster. It seemed like the thinner blood was flushing stagnant iron out of my cells - totally layman's idea - I have not found any research on this.
How is your Vit D? Some of us cannot absorb it from tablets and the sun (including myself). If your Vit D is low, buy a practitioner's brand of Vit D3 forte drops. Also have your Vit B12 tested - you may need injections (the only form that works). My husband cannot absorb B12 in any other form. CoQ10 and Vit E have been recommended by GH researchers to help repair mitochondria caused by iron deposition.
Maybe some of my experience is helpful to you. Let us know how you go.