And It's About Time There Was Some Support For Cushing's!
Sorry this is so long, but, in order to give a basis for my suspicions, I have to include pretty much my whole medical history. I was a normal-sized child, until the 3rd grade, at which time, I became “chubby.” My family, naturally, attributed it to not enough exercise, too much food, even though I was not eating any more/differently than I ever had, nor any more/differently than my siblings…which probably wasn’t all that healthy (you know how kids eat), but was still not anything of concern.
When I got to my freshman year of high school, metabolism finally kicked in, & I slimmed down to an appropriate weight for my height/build (130 lbs). I was a cheerleader & enjoyed an active social life. The only things of note, medically, were frequent strep throat infections & infrequent, extremely heavy menstrual periods that would be so heavy, I would have to miss school & lie in bed. I, once, went 4 months without a period, for which my mom took me to our family doctor. I was a virgin, at the time, & the doctor was a family friend, so I was too embarrassed/shy to let him do a pelvic exam on me, so he just said we’d watch the situation & order tests later, if necessary. It was never necessary, as I finally had a period, the next month. But it was not uncommon for me to skip periods.
Oh, & I had extreme RLS (Restless Leg Syndrome), when I was a teenager. I would have severe leg cramps 2-3 times a night &, when I would be sitting in the living room, watching TV, especially as I got drowsy, my legs & arms would twitch & “jerk”, involuntarily, & ache. This really concerned my dad, who would freak out, watching me do this, so he had me accompany him to his chiropractor, who diagnosed me with RLS & said something about my adrenal glands or something hormonal, & “prescribed” me desiccated bovine thyroid & adrenal glands. I don’t know if it really helped me, or if it was just a placebo effect, but the problem seemed to lessen. I took those for a while, until I decided they were just too expensive to keep taking.
In 1989, I got married at 19 & got pregnant 6 months later. The pregnancy was fraught with problems. I developed gestational diabetes around the 5th month. Then, late in the 6th month, I began to develop symptoms of preeclampsia (dangerously high blood pressure, extremely swollen face & legs). This was monitored, but not treated, for the rest of my pregnancy. I went 2 ½ weeks overdue, without any signs of labor, so I was admitted to the hospital for induction. After 3 days of induction, with no progress, they did a c-section, & my daughter was delivered healthy. I didn’t learn, until after surgery, that the doctor had been concerned about doing surgery, because my platelet count was very low, & he was concerned about bleeding.
When I went for my 2 week followup, I was told that I was being scheduled for a colposcopy. I asked what that was & said that I hadn’t been told anything about that. They said that my last pap (which was done, when I was around 3 months pregnant) had come back “abnormal,” & further testing was necessary. I had never been told anything about my pap smear being abnormal. The colposcopy was performed with a biopsy, but the results came back normal, & no further followup was scheduled. Shortly afterward, I went thru a divorce and remarried in 1993. On the day of my wedding, I weighed 140 & was wearing a size 8 wedding dress.
In 1994, after some time working in the medical field (counseling), I was notified that a TB skin test I’d had came back positive. I was informed that that merely meant that I had recently come in contact with someone who had active tuberculosis, but that preventative therapy would be recommended. I began a 6-month daily Isoniazid regimen, administered through the health department. I completed the Isoniazid therapy without incident.
In 1998, I became pregnant again, with my son, & was diagnosed, very early in the pregnancy, with thrombocytopenia (low platelet count). This was monitored, throughout the pregnancy, by a hematologist. I don’t recall having any problems with my blood pressure or blood sugar, during this pregnancy, so no further intervention was necessary. As I approached my due date, again with no signs of imminent labor, my OBGYN & I decided upon a scheduled repeat c-section. The surgery went fine, & I delivered a healthy son. At the followup, the thrombocytopenia seemed to have resolved itself, & my platelet count returned to normal. The only other “odd” thing, during the pregnancy, is that I began to develop thick facial hair. My mom noticed it, & joked about me looking like a werewolf, and stated, “Don’t worry, it’s just the hormones. It’ll go away, after the baby gets here.” It has never gone away, & I have to pluck thick black hairs from my chin, every morning, &, every couple of weeks, I have to shave the thick, white “peach fuzz” from my cheeks, with an electric razor.
After about 1 1/2 yrs, postpartum, attempting earnestly to lose weight, & failing to do so, I decided to go to a weight loss clinic, for weight loss assistance. They did a thorough physical & blood work, before suggesting a diet plan. A week later, in the mail, I got a letter from the clinic, informing me of a very abnormal result on my thyroid test, & suggesting a followup with my regular MD. I followed this up with Dr. B, my regular MD, who is also a specialist in internal medicine, who confirmed that I did have hypothyroidism, & began a treatment regimen with Armour thyroid, which I have taken ever since. Despite “normal” readings, though, I have still not been able to lose the weight, or lose the other symptoms (hair loss, sensitivity to cold, etc.). In fact, my weight has continued to increase rather dramatically, despite being on one type of “diet” or another, almost continuously. I currently "tip the scales" at 210 lbs. With my family's rampant history of diabetes, heart disease (father had 2 heart attacks last year), & high BP, I don't feel I have the luxury of being blithe about my weight.
Around 2001, I began to develop a sharp pain in my abdomen & back, that seemed to worsen after meals, so I sought medical advice from Dr. B for that. I had a borderline positive H-Pylori test, so he referred me to a gastroenterologist for followup. The specialist ordered a gallbladder ultrasound, which came back negative. He did an upper-GI scope, which was, essentially, inconclusive, except for some minor stomach lining irritation. So, he prescribed me Nexium, & suggested an MRI. I, stupidly, failed to follow up on the MRI, because I was frustrated with the costs of the tests, & the lack of finding a definitive diagnosis, so it was never done. The problem seemed to resolve itself, so I never followed further.
In 2004, I had a laparoscopic tubal ligation go terribly wrong. The doc hit a major artery & vein & I almost bled to death, before they could fix it. I had to be resuscitated twice, & received 7 units of whole blood, platelets, steroids, & various other life-saving fluids. As a result of the pressure placed on my groin, to save me from bleeding to death, until I could be resuscitated, I developed a blood clot in my left femoral artery. I almost lost my leg. I woke up in ICU, on a ventilator, with my leg feeling literally like it was about to explode. They took me back to surgery for a 4-compartment fasciotomy for compartment syndrome & a repeat thrombectomy. I was in ICU for 4 days, in the hospital for 2 wks. & off my feet for months. I am still going to PT for my disabilities in my foot, which include severe edema (for which I wear a compression stocking) & a severe contracture of the big toe, with 2nd & 3rd toes turning "hammertoe". My vascular surgeon, MD, PT, & orthopedic doc all agree that, by now, these, plus my neuropathy in my foot, are most likely permanent.
Shortly after leaving the hospital, I began having the abdominal/back pains again, so Dr. B restarted the Nexium, & ordered another gallbladder ultrasound, which, again, showed nothing. As it was believed this second “episode” was triggered by the multiple surgeries & all my medications, at the time, nothing further was done, & it, again, seemed to resolve itself.
In 2006, I still watched my weight increase, steadily, despite always being on some kind of diet. I was riding 12-20 miles a day on my bicycle, with ZERO weight loss. Dr. B was stumped as to why I wasn't losing weight. Since I was having some other “odd” symptoms, I asked Dr. B about a test for Lupus, which he ordered. The results were in the normal range, so Lupus was ruled out, & my thyroid dosage was increased without further testing.
Now, I still continue to watch my weight increase, despite regular exercise & diet. My coworkers & family cannot figure out how I continue to gain weight, with what I normally eat, because they watch what I eat, & feel I should be losing weight like crazy. I am still dealing with the facial hair. My husband has made the comment 2 or 3 times, in the past couple of years, that I am getting a “hump” on my upper back, so I’d "better sit up straight". I argued with him that I’m not, but he insists I am. I still deal with Restless Leg Syndrome, at times, especially if I am extremely fatigued, the stomach/back pain returns occasionally, & I have a vague nausea to deal with daily (It has fooled me, more than once, into believing that, somehow, I am pregnant, despite having a tubal ligation.), &, over the last couple of weeks, I have gone back & forth between diarrhea & constipation (this last one may be due to the antibiotics I was taking for a sinus/throat infection). I am still taking Neurontin for my neuropathy pain in my foot, from my surgery ordeal, and 180 mg Armour thyroid.
I just don’t feel right. I stay in a funk a lot. I don’t know if you’d call it a true “depression”, but more like the “blues.” I lose my temper a lot. That’s rough on my family. Lately, I’ve been getting tired more easily & not sleeping well. The person I see, in the mirror, & the person that I feel like, physically, doesn’t match the person I know I am, inside. I don’t know what to do about it. I feel like I will be accused of being a hypochondriac, if I persist in finding a solution, but I can’t leave things as they are & lead a productive life. Given everything I’ve been through, medically, in the past few years, I think it’s pretty obvious I’m not fishing for more medical treatment. I’d just as soon spend my money, time & energy on something “more fun,” but I’ve got to satisfy this nagging feeling that something just isn’t right, & I’m willing to do whatever it takes to find out.
Thankfully, Dr. B is very accommodating & open minded about testing. I think this comes both from him being an internal specialist & because he, himself, struggles with his weight. I will see him today, to see what tests he recommends. I am going to bring the Cushing's fact sheet and test suggestions & see what he thinks. I will keep you all posted. Thank you for this site.