Wednesday, May 23, 2012

Succsess!! My experience with Hair-An Syndrome (PCOD)

     I had a life event happen early Sunday morning, (I'll spare gruesome details), that lead me to an idea for a post... Surprise... Here I am! I write about this not to bore you, but rather because it directly relates to my weight loss journey. The medical condition I want to talk about is suffered by many who may not even know they have it. Many doctors still don't know a lot about it. The testing is very specific and without it, the condition is often mis diagnosed or not diagnosed at all. I will let you in on my life event at the end of my post. :)
     I have struggled with weight most of my life, I think the last time that I was skinny I was 4. My mom had a hard time figuring out why I was gaining so much weight as at first I was not really eating too much, yet the weight kept creeping up. When I was 5 I hit a very precocious puberty to which the doctors all told my mother she was being over protective and that this was normal. I don't know if it was lack of medical knowledge at the time or if these people originated on some other planet, but, the typical 5 year old does not have a period, pubic hair, or breasts. The monthly visitor only came once at the time but like a flower in spring I continued to bloom at alarming rates. When I was 12 the visitor returned again, only once, and finally the doctor's began to do some testing. Over the next several years I was taken to many doctors who ran many tests most of which were normal, though now the doctors are agreeing that something isn't right, they're just not sure. At around the age of 17 we finally find someone who seems to have a clue and I am "diagnosed" with PCOD (Poly cystic Ovarian Disease). It fit, the extra weight, only menstruating with the help of birth control, larger than normal ovaries, and facial hair. The treatment: continue birth control, and to help with the facial hair, a diuretic called Spironalactone. Well, something still wasn't looking right and 2 years later at the age of 19 I met a doctor at the University of Utah's Endocrinology Clinic who took one look at me and says: "You've got Hair-An-Syndrome." Tests were ran to confirm, and bingo!! We finally have an answer to what is wrong with me.
     For those of you now wondering what in the world that is, I will explain, first in somewhat lamen's terms. Hair-An Syndrome is a relative of PCOD, the term is an acronym, I will start with that. HA- hyperandrogenism (excess androgens), can cause: unusual hair growth, oily skin, hair loss, acne, increased libido (not always a problem LOL), menstrual disfunction and infertility. IR- Insulin Resistance (insulin does not function right) can cause: Insulin resistance ,can come in different forms; some people have high levels of insulin but normal levels of glucose, while others have glucose measurements in the diabetic range. This can lead to type 2 diabetes (more info through link). AN- acanthosis nigricans, can cause you to look like you have a dirty neck, and increased skin tags. For years my mom accused me of not washing my neck... HA! My neck's not dirty mom! Treatment for this varies, but usually includes Metformin, and birth control. I have used bc in the past but was always terrible at taking my medication. After doing some reading I have decided not to take bc (the risks aren't worth it to me). I wanted to begin taking progesterone instead, to bring on a menstrual cycle, but do not have insurance to see the appropriate docs. About 5 months ago I began taking my Metformin on a regular basis, not really expecting much other than keeping my insulin resistance under control. Guess What??? It works!! I have had my first cycle on my own (without the aid of bc) since I was 12!!!!!!! This is fantastic news because I never thought it possible. If I can cycle on my own, perhaps I can conceive on my own???
     Here is a link where you can get more info on HAIR-AN syndrome:    HAIR-AN Syndrome: A Multi system Challenge


  1. Hey that's cool. Good job explaining it all.

  2. You did a really good job of explaining this Brandie. It all seems so familiar reading your story. I went into early puberty around 8 yrs old and was told I had PCOS in my teens. I'm so pleased for you that you've had a cycle, fingers crossed for more in the future. :)

  3. Thank you ladies... It's not an easy thing to explain LOL. My fingers are also crossed for more cycles, or even better....a baby.