CS and all the crap that goes with it
Well, I thought I would inform everyone of what has been going on with me. Have you ever looked back over the last few years and thought, "What the hell is going on with me? This didn't seem so severe back then!"? I have come to realize in the last couple of months that I may have a rare condition, Cushing's Syndrome, which is caused by an over-production of cortisol, a hormone the body produces naturally. Before I get into that, though, let me start at the beginning.
I started my period on my 10th birthday. Hurray for me! (NOT!) Well, my period has never been very regular, but I never paid much attention to it. My mom and I never discussed things like that, so I never knew that irregularity could be a sign of anything other than irregularity. Sometime in high school, probably aroung my sophomore/junior year, it started getting more and more irregular. Still, I didn't pay much attention to it. Around that same time, I started gaining weight, which I just passed off as being genetic, since many of my family members are rather large. I also started growing small amounts of hair on my chin (easily taken care of by plucking).
Fast forward a couple of years, to my freshman year of college. By now, I had developed cystic acne. My first cyst developed when I was a senior in HS, but I just thought it was a really deep, sore pimple. By the first semester of my freshman year, it had grown to the size of a quarter and was extremely painful. I also had several other smaller cysts on both cheeks. Along with the cystic acne came worsening growth of facial hair and hair on my stomach and breasts. I started noticing purple stretch marks on my upper stomach, breasts, and around my armpits(probably also on lower abdomen at that time, but I didn't have a mirror to see), a slight hump had started to form on my upper back between my shoulder blades (I thought it was due to being overweight), I was have a lot of trouble with depression, and I was starting to have thinning scalp hair (still thick, but noticably thinner to me). To top it all off, my period was entirely screwed up. I would usually have very long periods, the first few days being very heavy and then lightening dramatically and lasting for weeks. By this time, I knew this wasn't normal, but I didn't want to think about anything being wrond with me.
Around my junior year of college, I started researching what might be wrong with me. I came up with PCOS. Of course, I never told anyone or saw a doctor, because the most important indicator of PCOS is a family history of the condition, which I didn't have. During this year, after seeing a doctor about the acne and being prescribed several different types of antibiotic (none of which did much at all), I was prescribed Accutane, which is basically the last-ditch effort when it comes to curing acne, and comes with lots of possible severe side-effects and the price to match. Of course, it didn't help, and I had to take antibiotics while taking Accutane just to take care of the acne flare-ups.
When I went off Accutane, my mother told me that one of my cousins had recently been diagnosed with this strange condition, PCOS *gasp*. I, of course, thought, "Wow, here's my diagnosis! I can get better now!" I got a referral to a doctor that did gyn exams, had bloodwork done, the works. During the exam, the doctor asked me if I had any dark purple bruise-like marks on my body, and I said no, because I thought my marks were just stretch marks. She told me that there was a major condition called Cushing's Syndrome that had a lot of the same symptoms as PCOS, but could be fatal if left untreated. She also said that if my labs for the PCOS came back normal, we would do a dexamethasone suppression test to rule out CS. This is where I went really wrong. I failed to do the research necessary to know that CS patients will often have similar lab results as PCOS patients, and that other tests, including a cortisol test were necessary to figure out if someone had Cushing's or not.
Of course, my labs weren't normal, and my doctor never ordered either a cortisol test (which she should have) or the dexamethasone test. Now, I am not trying to say that I don't have PCOS, because I do, my lab tests did prove that. But like my new endocrinologist says, there isn't any reason a person with PCOS can't also have Cushing's.
Fast forward a year and a half. The lack of the cortisol test has always bothered me, but I didn't want to question my doctors about it. I have tried several different weightloss programs, even resorting to prescription appetite suppressants, with no luck. Everything I lose, I manage to gain back, plus some. I finally went to the nurse practitioner that worked with to try and lose weight, and asked her to do a cortisol test for me. Of course, it was high. It came back as 32, normal being 4.3-22. We did a dexa methasone suppression test, and I suppressed my cortisol to 1.8. I was told that this was negative for Cushing's, but me being like I am, had to go online to research it myself. I figured that I wouldn't be taken advantage of by a doctor again. I found several articles that said that anyone who suppresses to 1.8 or higher with a low-dose overnight dexamethason suppression test should continue testing for Cushing's. When I tried to bring this to the attention of my doctors, I was basically blown off and told to see an endocrinologist. Which I did, and I am now in the process of completing 2 24-hr urinary free cortisol tests, where I have to collect all my pee for a 24 hr period and take it to a lab.
I started my period on my 10th birthday. Hurray for me! (NOT!) Well, my period has never been very regular, but I never paid much attention to it. My mom and I never discussed things like that, so I never knew that irregularity could be a sign of anything other than irregularity. Sometime in high school, probably aroung my sophomore/junior year, it started getting more and more irregular. Still, I didn't pay much attention to it. Around that same time, I started gaining weight, which I just passed off as being genetic, since many of my family members are rather large. I also started growing small amounts of hair on my chin (easily taken care of by plucking).
Fast forward a couple of years, to my freshman year of college. By now, I had developed cystic acne. My first cyst developed when I was a senior in HS, but I just thought it was a really deep, sore pimple. By the first semester of my freshman year, it had grown to the size of a quarter and was extremely painful. I also had several other smaller cysts on both cheeks. Along with the cystic acne came worsening growth of facial hair and hair on my stomach and breasts. I started noticing purple stretch marks on my upper stomach, breasts, and around my armpits(probably also on lower abdomen at that time, but I didn't have a mirror to see), a slight hump had started to form on my upper back between my shoulder blades (I thought it was due to being overweight), I was have a lot of trouble with depression, and I was starting to have thinning scalp hair (still thick, but noticably thinner to me). To top it all off, my period was entirely screwed up. I would usually have very long periods, the first few days being very heavy and then lightening dramatically and lasting for weeks. By this time, I knew this wasn't normal, but I didn't want to think about anything being wrond with me.
Around my junior year of college, I started researching what might be wrong with me. I came up with PCOS. Of course, I never told anyone or saw a doctor, because the most important indicator of PCOS is a family history of the condition, which I didn't have. During this year, after seeing a doctor about the acne and being prescribed several different types of antibiotic (none of which did much at all), I was prescribed Accutane, which is basically the last-ditch effort when it comes to curing acne, and comes with lots of possible severe side-effects and the price to match. Of course, it didn't help, and I had to take antibiotics while taking Accutane just to take care of the acne flare-ups.
When I went off Accutane, my mother told me that one of my cousins had recently been diagnosed with this strange condition, PCOS *gasp*. I, of course, thought, "Wow, here's my diagnosis! I can get better now!" I got a referral to a doctor that did gyn exams, had bloodwork done, the works. During the exam, the doctor asked me if I had any dark purple bruise-like marks on my body, and I said no, because I thought my marks were just stretch marks. She told me that there was a major condition called Cushing's Syndrome that had a lot of the same symptoms as PCOS, but could be fatal if left untreated. She also said that if my labs for the PCOS came back normal, we would do a dexamethasone suppression test to rule out CS. This is where I went really wrong. I failed to do the research necessary to know that CS patients will often have similar lab results as PCOS patients, and that other tests, including a cortisol test were necessary to figure out if someone had Cushing's or not.
Of course, my labs weren't normal, and my doctor never ordered either a cortisol test (which she should have) or the dexamethasone test. Now, I am not trying to say that I don't have PCOS, because I do, my lab tests did prove that. But like my new endocrinologist says, there isn't any reason a person with PCOS can't also have Cushing's.
Fast forward a year and a half. The lack of the cortisol test has always bothered me, but I didn't want to question my doctors about it. I have tried several different weightloss programs, even resorting to prescription appetite suppressants, with no luck. Everything I lose, I manage to gain back, plus some. I finally went to the nurse practitioner that worked with to try and lose weight, and asked her to do a cortisol test for me. Of course, it was high. It came back as 32, normal being 4.3-22. We did a dexa methasone suppression test, and I suppressed my cortisol to 1.8. I was told that this was negative for Cushing's, but me being like I am, had to go online to research it myself. I figured that I wouldn't be taken advantage of by a doctor again. I found several articles that said that anyone who suppresses to 1.8 or higher with a low-dose overnight dexamethason suppression test should continue testing for Cushing's. When I tried to bring this to the attention of my doctors, I was basically blown off and told to see an endocrinologist. Which I did, and I am now in the process of completing 2 24-hr urinary free cortisol tests, where I have to collect all my pee for a 24 hr period and take it to a lab.