But soon that was not enough. My scalp was there, visible through what looked like a stringy bead curtain. One dreadful afternoon, I got the scissors out and started hacking away. For the next several months I wore a bandanna on my head and looked for all the world like a strung-out biker chick. I bought one awful hairpiece that I never even took out of the bag. Then I ordered a full wig, and when I tried it on my spouse muttered something about "big hair"--definitely not a compliment--and I never wore it. I bought yet another wig and wore it home from the shop and then one more time--to a Halloween party.
I went to many doctors, even after my diagnosis, to find out why my hair was falling out and if it would ever go back to normal. It was the dermatology clinic staff at a teaching hospital who told me bluntly that if iron levels were too high or too low, there'd be problems.
As my phlebotomies progressed, my hair filled in a little bit. I set the bandannas aside and returned to the comb-back. When my ferritin got down to 100, I thought everything would be okay, hairwise, but the liver specialist said that HH patients with cirrhosis had to keep their ferritin below 50. So I had more phlebotomies. And my hair thinned out again. The comb-back was no longer sufficient to cover my scalp, so I transitioned to a ponytail, thus concentrating my remaining hair over the back of my head.
I found something at Keratin.com that said you needed a ferritin of at least 70 for at least six to twelve months to regrow hair. It said that with ferritin between 40 and 70, hair growth would be stable and no more. It said that with ferritin below 40, hair loss would occur. (I was already well aware of what would happen to hair with a ferritin level approaching 4,000.)
For more than eleven years, my ponytail has been steady-state; everyone recognizes me by my ponytail. But now, as I enter menopause, my ferritin accidentally got up over 100 and there was no regrowth. In fact, my scalp is starting to show again. I recently ordered yet another wig (this time online)--and sent it right back because my head is apparently unusually large for my average-size body. The few large-size wigs all looked dangerously close to "big hair" and didn't come in a color resembling my own streaky "gray on gravy" hue.
I'm at a complete loss. I wanted to shift to a wig before I got embarrassingly bald, but I just can't seem to pull the trigger and make that final cut.