Stress and Vitamin Deficiency

After my radical cystectomy, I experienced severe hair loss. Although I did not end up bald, my medical team estimates I lost about 75% of my hair. I had very thick, curly hair to begin with, so to a stranger, I may not have looked different. But I and my family could see the difference. In the shower, I would end up with handfuls of hair as I showered and for a time it felt like my hair would never stop falling out. It was devastating as I was trying to come to terms with my diagnosis, new scars, and an ostomy; now, my favorite thing, my hair, was also being destroyed.

It took a while to be taken seriously

Thankfully, over the following months, as I recovered and got healthier, the hair loss slowed. But four years later, I am still experiencing an unusual amount of hair loss, and I’ve noticed in general, my hair is much thinner. I’ve also noticed that I never recovered the energy I had before my diagnosis, and I experienced a significant amount of weight gain. Something just wasn’t quite right. I brought up my concerns to my oncologist a number of times, but it took almost a year for her to see that nothing was improving, and I was serious about it.

Finding the answers to my concerns

I got a referral to an endocrinologist, and we spent an hour going over everything. Every small symptom and especially how I felt before my diagnosis, during active treatment, and in the months after finishing treatment. She did a blood panel, and we got confirmation that something was off. I was severely vitamin D deficient and iron deficient and had very high cortisol levels. We aren’t sure if this is a carryover from how long I was anemic before my cancer was discovered, if this is a result of surgery, or just how my body is now after fighting cancer.

We had a plan in place

The iron deficiency explained a good part of my hair loss. The lack of vitamin D also contributed to my hair loss, but also my energy levels. The cortisol spoke to the weight gain and inability to lose weight no matter how hard I tried. So we started with the easiest “cure”. I started taking regular vitamin D and iron supplements, while also being conscious of eating foods that were high in these nutrients. Regarding my cortisol, I had to find a way to reduce my stress (easier said than done).

Finding things that helped reduce my stress

It took 2 months of regular supplements and improving my diet so notice my hair loss slowing. Although I do experience higher than normal hair fallout still, it is no longer by the fistful in the shower. My vitamin deficiency is permanent. Although my levels have improved, my team does not feel that I will be able to stop supplementing and being aware of my diet. The cortisol aspect was a little more difficult. I sought out therapy and medication to manage the anxiety I developed post-diagnosis. I also made a point to find activities that I enjoyed and let me escape from my cancer bubble. It took much longer to resolve my high cortisol, but over time my levels have lowered and I felt better.

I’ve been working with my endocrinologist and therapist for six months now and I am so thankful I pushed my oncologist to take these concerns seriously. I feel the best now that I have in a long time. I spent so long being so sick I almost forgot what it was like to feel “normal” again.