Ok, I could write like 10 posts about hormones. I’ve spent hours and hours researching them. I’ve tried talking with doctors, naturopathic doctors, endocrinologists, acupuncturists, friends etc. I’ve read tons of blogs, books and forums. It’s SO HARD to figure it all out. I feel like a detective that’s been working on the same case for years, but I have good news to report; I feel like I got a big break in the case!
I like timelines so I’m going to tell y’all a little story about my journey with hormonal problems and the medications that helped and made them worse.
~2001: It all started with painful periods and acne. I was a cute teenager and was trying hard to stay cool so I was OBSESSED with treating my acne. I’d make my parents take me to the dermatologist all the time and I tried everything (topicals, antibiotics etc). Finally, I tried Accutane which is this really intense dose of Vitamin A that causes all kinds of liver problems and birth defects but it supposedly was a miracle for getting rid of acne once and for all. My parents weren’t sure I should do it but I remember proclaiming “I’d rather die and have good skin in my casket than live with acne anymore”. Honestly my acne wasn’t even that bad. I wish someone would have helped me with my self-esteem instead of trying to fix the acne.
At that same time, I was also starting to be sexually active but also my periods were so painful I’d have to go home from school so they put my on birth control. I was excited because I heard your boobs got bigger and it helped with acne too. Sounded like a miracle drug to me.
~2003: So anyway, after doing the full course of treatment, the Accutane didn’t even work. I was devastated. I went back to my dermatologist and he said there was one other option that miiiiight work. It was called Spironolactone and it’s an anti-androgen that suppresses testosterone which can exacerbate acne. He said it is totally safe and something I could be on for a long time if I didn’t have any problems.
I started taking it and it actually worked! I was soooo excited. My face was perfectly clear. Around this same time, my hair started shedding and I remember my doctor saying it might be because my body was still healing from the accutane. I had beautiful, thick, curly hair so I wasn’t all that worried about it. I was loving my over estrogenized body and my clear face so I just focused on that.
~2007/8: Things went great for a few years until I was in college and my hair really started falling out and I was gaining weight. I think my mom had recently been diagnosed with hypothyroidism and I was convinced I had it too. My thyroid was never technically out of range but they only ever tested the TSH which is a super crude method of assessing thyroid function. But despite it never being out of range I basically begged and pleaded to be put on thyroid meds to help me lose weight and stop the hair loss. It did help and I felt less fatigued, got skinnier but my hair never really got better. I recall stopping spiro and birth control for a few months and my period was sooo heavy and painful and I broke out.
~2008-2012: Again, things kind of just went along more or less fine. I was always worried about hair falling out and if I started gaining any weight, I’d just ask to increase my synthetic thyroid medication and the doctors would comply. I started using rogaine to combat the hair loss and it seemed to help a bit. I’d read tons of hair loss blogs and it made me sad because it seemed no one ever had a solution except for Spiro and rogaine and hair extensions or pieces. I found some relief knowing there were a lot of women going through the same thing but I also felt ashamed and full of fear. I felt like a slave to the synthroid, the birth control and the Spiro because I was afraid if I ever stopped any of them, all my hair would fall out, I’d be a pizza face, my metabolism would just stop working and my uterus would basically fall out every month. I know that sounds extreme but I really thought the worst.
~2013/14: I was in a safe and loving relationship and I finally shared some of these fears with another human (besides a dozens of doctors) and got some support with trying to do something about breaking out of this prison. I knew I wanted kids one day and that I’d have to go off birth control and Spiro to do it. I think part of me was waiting until I had someone in love with me because I felt if I didn’t have that, no one would be attracted enough to me to date me or knock me up. I feel crazy writing this but screw it, I’m tired of holding all of this in! He promised he’d support me and love me even if I had a pizza face and no hair. I didn’t really believe him but I decided to go for it. I went off hormonal BC in January 2014 and to my pleasant surprise, my period was immediately regular and not really painful at all. I felt way more in tune with my body, aware of where I was at in my cycle and I knew immediately that I’d probably never go back on hormonal birth control.
~2015: I got really sick with a mono flare up after I got back from Burning Man in September. I was sick of going back to my PCP and having them prescribe another round of antibiotics for my recurrent strep throat partly because it wasn’t working but mostly because my hair was really shedding and I read that high fevers and antibiotics can cause that to happen. So I contacted a naturopathic doctor/therapist and after spending 5 hours with me, she changed my thyroid meds (from synthroid- which can cause hair loss btw- to a compounded T4/T3) and gave me homeopathic Lachesis (I’ll write a whole post about the healing powers of snakes in my life) and a ton of supplements. It took about a year but I was slowly nursed back to health and I felt soooo much better. I felt more vital, more energy. She did a lot of more sophisticated tests of they thyroid and found that though my TSH and T4 were normal, my T3 was all off. She actually drew me a diagram about how the body converts T4 to T3 and how to support that mechanism better or supplement the T3 directly. I felt more hopeful about my hormones and my future health than I had in a long time. I told her my goals of going off Spiro one day and maybe even the thyroid compound and she was super encouraging.
~2016: I feel like this was a year of resting, like I was in a little cocoon physically and metaphysically. I started seeing a TCM acupuncturist and talking about my goals of getting off hormones and balancing everything out so I can become pregnant in the next year or two. I got the urge to try going dairy free (I don’t even remember where the idea came from) and I did and I LOVE it. I don’t miss it at all and I instantly felt more energized, cleaner, happier. I don’t know what it was but sometime in December I just got the urge to research Spiro more and figure out how to taper off of it. I found out all of this stuff about how Spiro CAUSES hair loss. Let me repeat that. SPIRO CAUSES HAIR LOSS!!
The same medication that the doctors told me would help my hair loss (in addition to my acne) is actually the thing causing the very problem that’s been plaguing me for over a decade. I read some good forums of people feeling like a prisoner to it just like me and how they tapered off and felt so much better. I read one woman’s story that is very similar to mine and she talked about how she figured out it was actually the dairy causing her acne. So long story short, I felt inspired to get off this drug once and for all. I feel less afraid of my acne coming back because I don’t do dairy anymore but also because I just love myself overall way more and acne is not going to be a big deal anymore.
~2017: Presently, I’m in the process of tapering. There’s not much out there on how to do it so I decided to go down 25 mg every month until I was off. I was on 100 mg so I went down to 75 mg in Dec. My doctor said I could taper faster so I just went down to 50 yesterday and I’ll do that for 2 weeks, then 25 for 2 weeks and then off. I noticed like no difference from 100-75mg. I’m a little scared but mostly I feel excited. My acupuncturist said that hair loss is related to an imbalance of the kidney qi which also is related to fear. I feel a little jipped and frustrated that I had to find all of this out myself and that it took me so long but ya know what? The lessons and the teacher come when the student is ready. I just haven’t been in a place to really take care of myself until the last couple years. It saddens me that western medicine doesn’t educate us about this but it’s not surprising. I stopped trusting western medicine at the same time I started seeing how capitalism, colonialism, and the patriarchy collude to fuck everything up for our bodies and our liberty. Don’t even get me started…
My word for this year is fearlessness and this process just feels so aligned with that. Like it’s the right time for all of this. I keep imagining myself off the spiro, with clear skin, my hair flowing and my body and emotions and spirit coming back into balance making more more in tune with the source and these fellow spiritual beings having their own human experiences. It’s perfect. I don’t know what else to say about it but I’ll keep updating my progress! Much love!