Hemochromotosis and bone loss

Hello, @joyceflorida

I have hereditary hemochromatosis and have just been diagnosed with osteopenia. I will be seeing my primary care provider tomorrow to discuss this very thing, so I don’t have any answers about medications just yet.

I am wondering if you take any medications or supplements that might be inhibiting absorption of minerals to slow iron absorption and wonder what the bone loss-slowing meds’ effects on absorption of iron might be?

My diagnosis results from a DEXA scan done earlier this month which was a second one in 9 years. The previous one showed borderline osteopenia in the lumbar spine, the sacro-iliac spine and the left femoral neck. This most recent one showed just enough loss in the femoral neck to qualify for the osteopenia diagnosis, but it actually showed improvement in the lumbar and sacroiliac spinal areas. So, something has actually been helping. My THINKING about it is that this may he due to body-weight-bearing resistance exercise I started in 2023 as part of physical therapy following surgeries for cancer and for tendon tears in one of my ankles, and diet. I have not been supplementing calcium at all during the last 9 years and avoid cow dairy as I also have celiac, and react with severe muscle spasms every time I attempt to take a calcium supplement.
I do seem to tolerate calcium in goat yogurt and dark leafy greens.

Unless I hear otherwise from my PCP tomorrow, I would not lean toward any of the osteoporosis meds I’ve explored on the osteoporosis page here on Mayo Connect. The side effects associated with those meds seem challenging to me and I have enough to cope with already. Given my family history of severe osteoporosis among both my grandmothers and my older sisters I am thinking that I’ve done very well to have lost so little over the past nine years by just starting the weight-bearing resistance exercises and increased focus on calcium in my diet. I’m going to be monitoring this very closely.

Another thought.., there is an online exercise program I started in January that is based out of the Onero Bone Clinic in Australia for people with osteopenia and osteoporosis. I do not have access to an Onero-trained PT here to guide me with actual weight lifting and percussive movement for this purpose. I like it and it is not too costly…about $7 usd per week, and very gradual and doable, gradually introducing movements that send gentle shocks up the spine and preparing for more resistance work. I am working my way through that program, which is based on very promising research that focuses on diet and exercise.

I hope you will hear more responses from others who have needed to use medications. I imagine it will require careful balance, and the two diagnoses together warrant your attention. I will check back here after my appointment tomorrow if I learn anything more.

Sending you best wishes with this and thanking you for raising the question at a time that’s so helpful to me!

@gynosaur