And It's About Time There Was Some Support For Cushing's!
Hello everyone, I am Dawnell. I'm 32 and I live in central Illinois with my 12 year old daughter. I have no diagnosis of Cushing's yet, but I've been riding this healthcare rollercoaster for about a year now.
In early 2006, I was working part-time at a collection agency and taking college courses. I also worked part-time as the editor of the college newspaper and was an intern at a local weekly newspaper.
That level of activity is a far cry from where I am now. I had to drop out of college and give up the internship. I also recently lost the job at the collection agency. My boss thought I needed to "buck up." Apparently since he couldn't see my illness, it doesn't exist. My health has deteriorated to the point that I spend all my time at home unless I have a medical appointment. My mother does my shopping and laundry. Most days I feel successful if I have the stamina to shower.
I've seen several doctors. My primary care physician was the first doctor I went to see. The first symptoms were fatigue and high blood pressure. I am sure most of you here will understand that when I say fatigue, it's because I've not found a better word in the English language to describe it.
I was under a lot of stress and pressure because of school and work. There was a huge issue of First Amendment rights at my college newspaper, which took a lot of my time and really stressed me out. Our faculty adviser was the root of the problem and spent most of his time sending me nasty emails. Apparently he didn't know it was a bad idea to put threats in writing. (DUH!) He no longer teaches there.
I went to my PCP to talk about the fatigue and my BP. I had already been on Celexa for mild depression since a miscarriage, but we decided to beef up the treatment with something stronger since I had so much stress. I got a prescription for Effexor XR and Toprol XL and was sent on my way. The fatigue, he and his partner thought, was due to the stress, my busy schedule and maybe a viral infection.
The prescriptions helped somewhat, but the fatigue continued and got worse instead of better. It waxed and waned. By May, I knew something else was happening, so I went back to the doc. I told him I was beginning to worry. The way I was feeling was having a big impact on my life, my family and my job. I said I was afraid I would end up losing my job. He agreed. He said if I didn't get it together I'd end up just like his crazy brother, living on the streets. He wanted to refer me to a psychiatrist.
I might be depressed, but I'm not crazy...or stupid. I know my body. I have lived in it for a long time. I know when something is not right. I didn't go see the psychiatrist.
In June, my daughter's father (whom she's never met) decided he would file for visitation. Great, more stress to load up in this wagon I'm towing around. (It's now March 2007, and he's yet to take the next step so I don't think he's very serious.) At this point, I figure all the stress is what's killing me.
By July, I went to a local urgent care since I didn't have a new family doc. The physician there did listen and said fatigue can be a sign of some serious problems. I was sleeping 16 or more hours a day. When I was awake I was about as coherent as a tree stump. Sometimes I could fall asleep and wake up to discover I'd missed 2 days. The urgent care doc couldn't fully evaluate me since he was not my family physician, but offered to refer me to a rheumatologist to see if Chronic Fatigue Syndrome or Fibromyalgia was the issue.
In September I was diagnosed with both. I was given more prescriptions...Relafen, flexeril...which made the fatigue even more disabling. Unless I'm in severe pain from the fibromyalgia I don't even bother taking the meds, because they make me feel even worse. I have talked to the rhematologist, tried to explain how I really feel and she says I should exercise and lose weight. I try to explain how impossible it is to exercise when I can barely leave my home. Gaining weight, not losing it, is what I've become successful at. I've never been skinny, but I've sure as heck never been this heavy. I've never gained weight so quickly either. The clothes I wore just a few months ago do not fit. Not even the ones with elastic in the waists!
At a routine check up with my urologist (I also have Interstitial Cystitis) I talked to him about the fatigue. He offered to check my testosterone level, which has bottomed out in the past and caused tiredness. It was low, but the hormone injection didn't help as it had in the past. He also suggested we look at Epstein Barr titers to see if I really did have a viral infection that could be causing all these symptoms. I tested positive so he referred me to a hematologist. My urologist is a physician who LISTENS, and he ADMITTED he didn't know much about it or how to treat me if that was the true problem. Wow, what a guy! Not to mention he has a great sense of humor and looks a bit like Julio Iglesias (sp?). Ok, I'm crushing a little....
After the Epstein Barr test, I desperately started searching the net for info. I knew there had to be an answer. I typed in my symptoms to different search engines and found PCOS and Cushing's more than once. That was also the first time I saw this site.
Last week my mother took me to the hematologist. I was pretty scared when I first got there, as he's in practice with oncologists at a large cancer center. Once I met him, I felt better. He listened, asked lots of questions, answered mine and actually did a physical exam. I explained all the symptoms from strange rashes to stretch marks, to overwhelming fatigue to lack of menstrual cycle to weight gain to hairs on my chinny chin chin... among others.
He pulls out his PDA and starts looking up info. He says he hasn't thought about it for a couple of decades since med school, but Cushing's pops in his head. The doctor is color blind so he wants his assistant to look at my rash to describe the color to him. She joins us, examines me and says do you have PCOS or Cushing's?
There's that word again. The hematologist says from the labwork, the Epstein Barr virus is convalescent and he doesn't feel I need to see him again. He wanted me to follow up with my new family doctor and offered to go ahead and order the first 24 hour urine cortisol to get me started on the Cushing's quest.
I stop by the lab at the cancer center to get the jug. The lab girl hands me the jug with a smile. I stand there a bit confused, as I'd never done a 24 hour urine test. I didn't want to be crude but I said "and I get the pee in here how?" For all I know I'm supposed to use a funnel and squat over the jug. She sighs, rolls her eyes and hands me a "hat." Apparently she expected me to just have one of these pee hats lying around my house. My mom and I get to the car and have a good laugh. If I lose my sense of humor along with everything else, I'm sure I'll give up.
I have an appointment to see my OB-Gyne tomorrow to evaluate the lack of menstrual cycle and check into PCOS. I also will get an appointment with the family doc to check out the 24 hour urine cortisol results this week. For now, I am still in limbo. I do however feel a lot better after reading other bios and getting some of this off my chest. Thanks for all the sharing and info on this site. My prayers are with all of you.
Last week I saw the OB-Gyne who thinks I have PCOS. Prolactin was ok, cholesterol is high and he wanted me to see the PCP for evaluation of Diabetes. He prescribed Provera to get a period started (absent for over 3 months, and NOT missed).
This week I got my first UFC back. To my surprise, there was barely enough cortisol to register on the test. The footnote said the results may be consistent with adrenal insufficiency. My PCP told me he'd have me come back in a few days to follow up with the next tests because he wanted to call a colleague and do some reading. He said he doesn't think he's ever ordered a UFC in all his years and wants to know we're doing the right tests so he can get me in to see an Endo.
Today I saw my urologist (interstitial cystitis). I showed him several pictures of myself over the past few years (a good tip from this site!) and he said "Oh my God, you've got Cushing's, don't you?" I was shocked. He was so excited he called his PA into the room to "test" him on the diagnosis by just looking at the pics. The PA said Cushing's right away too! He took a look at the UFC result and said we need to get an MRI of the adrenals. That's scheduled for next week. I also showed him a large "lump" (about 2 inches) on the front of my neck that showed up this week quite suddenly. He wants the PCP to see it on Friday when I go for the labs. He mentioned cancer.
My PCP's nurse called and they have blood tests scheduled for me on Friday. I asked what they were and she said one is a cortisol. She didn't know what the others were. Ohhh a blood test grab bag! What fun! Maybe we can have a "Secret Santa" with prescription drugs too!
In the meantime, I had to take an Ativan to control myself in order to call my dad and explain all this. I was bawling, because I'm terrified. I certainly don't want to elude to that. Daddy would want me to move home, etc. LOL God love 'em.
Until next time...