38
30
- Knuckle pain in fingers
- Abdominal pain
- Shortness of breath / difficulty breathing
- Heart flutters / abnormal heart rhythm
- Low sex drive
- Loss of menstrual cycle / period
- Constipation
- Diarrhea
- Bloat
- Fatigue / feeling tired
Daily. The joint pain, heart flutters, and IBS were the most common.
Yes. I would have to rest because of the heart flutters, which I still have. Also, the IBS was so unpredictable that, when planning an activity, I had to know where bathrooms were located.
My grandpa died from it and my dad was diagnosed (after years of searching for answers to his pains).
My iron count was 1170 and my saturation was 76%. I had phlebotomies every week for 48 weeks. I then took a 6 week break because I was just so weak and ill. I had another 6 treatments. I now have a phlebotomy about once every 6 months.
Double C282Y
He said to change my diet, avoid processed foods that are injected with vitamin C and/or iron, & limit my alcohol.
They wanted to know how I “caught” it. My parents were sad. Most people had never heard of it. There really isn’t much information. Most people (and doctors) think it’s rare. My doctor thinks it’s the #1 undiagnosed disease among people of European/Irish/British decent. He thinks, if everyone had a simple blood test, we would learn that 1 in 16 people have the HH and 1 in 6-8 are carriers.
Yes, I have joint pain that is like arthritis, IBS, fatigue, heart flutters, and zero sex drive.
Find other people with this genetic disorder for support; stay active; find a doctor that really knows about this disease; change your diet.
Thank you for organizing this place to share and meet others like me.
I am a retired teacher who loves to travel with family and friends. I enjoy antiquing and going to auctions. I live with my husband in rural Missouri. I have visited all 50 states and all of the provinces of Canada.