Hereditary Hemochromatosis
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My older brother was diagnosed about 2010. His doctor noticed his lab numbers being off and kept up with it until he figured it out. He was diagnosed with his ferritin level under 800. He started weekly blood draws and it affected him with exhaustion after the draws. He is now in maintenance and goes every so often for blood draws keeping check on his numbers.
I decided to get tested and was diagnosed too. My initial ferritin level in 2013 was under 400. I had a few blood draws and I was in maintenance pretty quick. All was ok until I had a TX to NC move in June 2017. I had lots of new doctor appointments going over all my life histories and issues. They checked my ferritin and it had started creeping back up unbeknownst to me since Feb 2017 labs. Ferritin was under 600. I have had one blood draw since arriving in NC and have more scheduled. Waiting on reports back from my labs to see if I need to go back but I know I do so I have to keep on top of it with us getting caught so early on.
Still have one younger brother holding out on even going to a doctor let alone being tested. Insert rolling of eyes.
My initial lab test in 2013 the doc rattled off the specifics but i have not seen it on paper so I have forgotten a lot but remember that both parents were carriers. That explains a lot with both parents passing at relative "young" ages. :( One maternal cousin has tested his ferritin and was fine and will periodically do checks on those labs from now on. No one else has checked. ;(
One thing I have noticed that is the earlier on that you find out you have hereditary hemochromatosis that you will have to be an advocate for yourself. I have received a lot of good advice from Facebook groups that I have joined. My head reels from seeing what some members ferritin levels were. WOW! I consider myself lucky and blessed. Still in the learning process on this.
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