I'll make this as brief as possible. End of 2009, I developed overnight pelvic pain and nonstop bleeding. This went in for 8 months straight and no OB, specialist, endo, etc. could figure it out.
One OB suggested I try BCP, which briefly stopped the bleeding but not the constant pelvic pain. And it caused hair loss, but as soon as I stopped, the hair loss stopped. I was blessed with a LOT of hair.
So more specialists ran more painful tests.
Several endos later, one suggested thyroid meds: Levothyroxine (25mcg). My thyroid levels were barely hypo (TSH: 3.68, Free T3 and Free T4 mid-range), but I was tired of bleeding and desperate for a fix. Two months on levo, then switched to Synthroid and my bleeding was not being helped...BUT I began losing my hair like a chemo patient: by the handful. Prior to this, I had ZERO hair loss.
The doctor said I was adjusting, to just wait it out. 6 months later on Synthroid and I was sweating profusely, losing massive hair, jittery, and still bleeding/in pain. My TSH at this point was 1.09.
I couldn't take all the hair loss. In 4 months, I lost40% of my hair. So I got off the Synthroid (end of 2010). BUT...my hair loss did NOT stop then and I'm still losing: it's now 2013.
I have had work ups, blood drawn numerous times, and ended up having surgery for the pelvic pain. Turned out I had ovarian adhesion (fixed since) and a small uterine fibroid that they could not remove because it's intrauterine (in the uterine wall). They weren't sure if I have PCOS, but I do get painful cysts and ruptured cysts every few months (could be why I had adhesions).
I was put then on MetAformin, just in case, but my 3a curls started to go flat and fall out eve more, so I stopped.
Since the surgery in Feb 2011, my pelvic pain is mostly okay. But my 28 cycle changed to 21 days, and my bleeding has been persistently HEAVY. TMI, but I go through 60 tampons per 7-day cycle.
I was told by one doc that my hair loss is Chronic Telogen Effluvium and would eventually stop. I started out with thick hair; now I barely have 40% of that hair. It's been 3 years of this!
I stayed off all meds for 2 years, and continued to lose massive amounts of hair. No recovery whatsoever. The loss is diffuse, but worse around the nape of my neck, above my ears, and the front of my forehead (you can see scalp now) and my temples.
I ALSO lost all the hair on my arms, lower legs, and 60% on my scalp. My hair also stopped growing, as did my finger and toe nails.
More recently (September 2012), out of desperation, a new doc suggested dessicated thyroid meds, very low dose. I started on 1/4 grain Naturethroid and my period came even sooner...every 19 days and even more HEAVY! Then, after 6 weeks of more hair loss and excessive menstrual bleeding, I was switched to 1/4 grain compounded T3/T4 dessicated Thyroid USP (more expensive, but less fillers). I had serious heart palpitations and more hair loss, including eyebrows (which was new).
Now I'm on dessicated compounded Armour, 1/4 grain. I continue to lose even more hair.
I obviously triggered something with my first round with Synthroid, because my hair loss will not stop, no matter what.
I've had my sex hormones tested: estrogen is okay, progesterone is slightly lower, testosterone is normal. Cortisol is normal (high end of normal, but it was a.m. Cortisol and I was super anxious). My current TSH is 2.89, I tested negative for thyroid antibodies, lupus, diabetes, the works.
I am considering getting off thyroid meds again because the hair loss is even worse!
I have noticed, even prior to this latest round of thyroid trial/error that my hair loss DOUBLES 10 days before my period begins, remains bad through most of it, then tapers down to less-scary for a few days after my period is over and starts up again during ovulation (CD 12).
I have*tried asking OBs which hormone may be causing this, and each has a different answer! Clearly, nothing scientific is happening, just random guessing on their part. But I think progesterone is what elevated before a menstrual cycle and is causing the loss to get worse. Am I wrong?
I recently read a book on What Your Doctor Will Not Tell You About Premenopause (I'm 39) by John Lee, and it says progesterone deficiency can cause my symptoms. I am not deficient, if only slightly lower compared to my estrogen.
But I thought progesterone increases before your period and tapers off by the end of the period, which is the time period when I lose the MOST hair.
I am desperate and depressed. I have to help myself at this point and I am out of money, so cannot do more tests. I gave seen so jany doctors and they are all clueless!
l keep reading conflicting stories about whether natural progesterone causes OR helps hair loss. Or whether I need estrogen (except it wouldn't be good for my fibroids). Or if I need Adrenal support. I haven't been tested for adrenal fatigue because I have run out of money and insurance doesn't cover it. So I'm on my own.
Can someone PLEASE help?!