And It's About Time There Was Some Support For Cushing's!
Hi all. This is a long one, but that seems to be the norm here so...
I was 150 lbs when I entered high school and I was 150 when I graduated in 1994. I went to boot camp in the Army and I entered at 150 and the day that I graduated I was still 150. Of course I was a LOT more fit, but my actual weight never changed. And that number is exact because it was about 5 lbs over the max height/weight requirement for the Army and so I always failed the weight test and had to have my body fat measured which I always passed (even a few days before we graduated). About a year after that, I got married to my husband, Patrick, and I was still 150. That was in 1996.
Here are some pics to show what I used to look like (I hope that I put them in correctly):
Immediately after I got married, I started to gain weight. Not just a little, but a lot. I felt like, and looked like, someone attached me to an airhose and just didn't turn the air off. The picture of me in the green bridesmaid dress is almost exactly one year after I got married, and the other picture is me in 2005. As you can see, again the air is just turned on full blast.
I notice right away that I was gaining a lot of weight, but I wasn't really exercising, I was newly married, etc etc and just kept chalking it up to that. Then I gained more and became depressed. And on and on it goes. I tried diets, I tried pills, I tried exercise and not only did I not lose weight, I just kept gaining. When I had my son in 2000, my milk never came in and I was devestated - I had all the books, etc to breastfeed. I was told that it was probably because I lost a lot of blood after the delivery of my son and my body just didn't have the extra energy to produce milk.
After my son was born, I never got my period again. It was that (and not the weight or other complaints) that someone took seriously and I was referred to an endo who diagnosed me with PCOS, hypothyroidism, and insulin resistance. My insulin levels were through the roof, but my blood sugar was fine, so no diabetes. I was given Avandia and Glucophage for the insulin and was quickly on the max dosage. I was given depression meds, and I was put on thyroid meds. I really thought FINALLY! This explains it and now I'll be able to finally lose weight, etc. At that point, that was really my biggest complaint. Of course, nothing changed at all. I felt mildly better, but nothing significant and the weight didn't budge. I was also told that if I wanted more children I would have to go on fertility meds because of the PCOS.
I became pregnant (with no meds and to our shock) about 6 mo later. I had my daughter in 2004 and this time the delivery went fine, but my milk didn't come in again. I was very disappointed and tried to get some answers on why this would happen, but everyone just kind of shrugged and said, whatever no big deal.
Next thing you know, I begin to have trouble with being tired during the day. Not just a little tired - like sleeping 10 hours at night and still falling asleep at stoplights during the day while driving. I went to the doctor (we are Navy so we have also been moving, etc and the docs are all over the country) and was eventually diagnosed as having sleep apnea AND restless leg syndrome - which I had never noticed but they found it during my sleep study. I got my CPAP machine and was told that it would make all the difference and I would finally feel less tired, which would allow me to exercise consistently and lose the weight. Nope. Still exhausted. They then decide that I have hypersomnia and explain that "sometimes people are very tired and we don't know why". So my depression meds are changed to effexor AND wellbutrin (depression is still a huge issue) and given provigil. This helps some, but I am still very tired and am noticing many other changes/symptoms. I keep bringing them up, but everything gets put back on "well, you are very overweight and of course you are going to be depressed and tired, etc. if you put down the ding dong and get off the couch, you'll feel better" (ok that last part was my phrasing of their words and tone, but it is the same.) I start having problems with flaking skin on my nose and severe bouts of psoriasis - both of which come and go. I am referred to a dermatologist who gives me some cream to put on my face.
So here I am. Everyday I take 2 large doses of glucophage, 1 dose of actos both for the insulin; wellbutrin and effexor for the depression; synthroid for the thyroid; mirapex for the restless leg syndrome; 3 doses of provogil (which is actually beyond the recommended limit); and an IUD for birth control, having given up on birth control pills which weren't giving me a period no matter what they switched it to.
My symptoms at this moment are: very tired all the time EXCEPT at night, when I seem to get insomnia - not a burst of energy to do anything productive, just restless enough to not want to sleep; I can't get through the day without a nap, despite the provogil; my weight is out of control and I now hover around 320; the bulk of my weight is right around my waist; I have purple stretch marks on my stomach and breasts and armpits, although they are not as dark purple as other pics of Cushies I have seen; I have acne which are actually more like cysts which are constantly on my breasts, my inner thighs and groin area, hair line, and on my jaw line - but recently they have started appearing on my waist, back, etc; I have gotten a few skin tags; my skin appears darker around my neck and my arm pits; I have a few small red freckles on my chest; I have started to feel nauseus in the mornings and normally have diarhea (please ignore my terrible spelling) all morning; I am now normally eating only dinner each day having not that much appetite for anything in the mornings and afternoons - I have to be the fatest noneater ever; I believe that I have both the buffalo hump and the moon pie face (as a matter of fact that was my husband and my nickname for me during both of my pregnancies); I keep getting flaky skin on my nose and between my eyebrows as well as terrible psoriasis - but it comes and goes; my depression and mood swings keep getting worse and worse - my husband is very worried about my crying and constant feeling of being overwhelmed by the smallest things - I have seriously wondered if I am bipolar; my face has always gotten very flushed when I'm tired or drinking, but recently it gets very flushed at odd times for no reason; I have no sex drive - while I still enjoy sex when we do have it, I never really feel like it. Here are a few pics of my round face and my suspected buffalo hump.
Obviously this has put an enormous strain on everything in my life. My husband and I love each other very much and he is still here after 11 years, but this is just getting harder and harder on both of us. I am so sick and tired of being sick and tired. I close myself off because I am so ashamed of how fat I am. And you know, the cysts, weight, etc etc etc are really enough to make you feel sexy, right? My kids watch TV all the time and often have to fend for themselves with snacks, etc because I am just so tired.
I have yet another appt with a new internest here in Minneapolis MN at the Park Nicollet Clinic and I am going to ask to be tested for cushings. After finding this site by accident and reading a few bios (especially Shauna's, who also wrote about the adrenal crisis), I immediately started crying because I felt like this was it. Something that explained everything I have been going through for 10 years. At the same time, I constantly wonder if I am a hypocondriac, if I don't want to just face the fact that if I got my butt of the couch and put down the fork, I'd be fine.
I think that after being told that by so many doctors for so many years, and even hearing the same thing (gently, nicely and with genuine concern for my health, but still) from my husband, I feel so confused. So my appt is on Mon and I truly appreciate this site for even giving me a direction to go in, as well as knowing what tests to ask for and demanding a few of them, to make sure.
Please feel free to respond with honesty. If I am off the mark and not truly a cushie, I would like to know that now and help myself not put all my hopes of finally getting an answer on Mondays tests. Also, any info, thoughts, etc on what else might be a cause for my issues, I would really appreciate it. I am just at the end of my rope and feel like not only do my husband and children deserve someone who isn't acting like 90 instead of the 30 that I am, but I deserve it too. I don't know when exactly I gave up hope on the idea of what my like could and should have been. Man, talk about Debbie Downer!! I didn't mean to be that much of a downer, but man, I just do not know where to turn.
Thank you all so much in advance, the site and the people on it are amazing.
I will, of course, update after my appointment and as I get more info. Thanks again.
Hi, I thought I'd update you on the latest. Pretty disappointing.
I went to the doctors today and I had pictures, a list of all my symptoms (2 pages) and a health history synopsis (also 2 pages). Well, she said that there were too many issues to deal with in this appointment and that this was going to take several visits to deal with it.
When I told her the biggest issues - the weight and the tiredness, she said that she really felt that it was probably due to my depression, PCOS and weight. I explained that I was maxed out on the insulin meds to help with the PCOS, maxed on the provigil to help with the tired and that I was eating less and less and still not losing any weight.
She said that she really felt that with the depression, she wasn't comfortable continuing without my seeing someone who can deal with that. So I got a psych referral for major depression.
And then I told her that I wanted a cushings test. She said that it was possible, and that she would order the 24 hr UFC, but that if it came back negative that I would have to realize it wasn't cushings.
She said that she thought the hump was really minimal, that I had stretch marks from my weight not striae, and that most of the other symptoms I had were more likely due to my weight and depression. So, while I do have the 24 UFC test that I wanted, overall I am VERY upset and disappointed. I basically have to hope that this test comes back positive and supports my suspicions, so I'm back to the normal "you're crazy".
And now I AM majorly depressed.