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My story sounds like every other Cushing's patient's. I was a typical kid growing up; always healthy, slim, and moderately athletic. I participated in physical education class at school, took swimming lessons and went horseback riding. There was no history of obesity in my family.

The year I turned 14, however, I knew something was drastically wrong. My weight went up and then I had gained 40+ lbs seemingly overnight - without changing my day to day habits. My menstrual periods were also irregular and I battled constant lethargy. My skin had also been problematic for a few years; severe breakouts were common. My skin bothered me the most, having had a flawless complexion thus far. The doctors told me it was part of puberty and that it would eventually go away. I was told to try various diets and drops from the naturopath. The Dermatologist tried antibiotics; my GP put me on the birth control pill, and then Accutane but nothing helped. I became fairly depressed.

In grade eleven I was tested for Polycystic Ovary Syndrome and Cushing's. I was told that everything seemed normal. After hearing the list of symptoms that I had, the physician diagnosed me with hypothyroidism and put me on Levothyroxine. My energy levels improved dramatically.

The beginning of the last semester of my senior year in high school, I became quite ill. I would do nothing but sleep for hours, and still feel exhausted. My brain felt foggy; my weight hadn't changed, and I was losing hair where I wanted it and growing it where I didn't. Weeks went by and my teachers wondered if I would graduate because I had missed so many classes. Finally with what little strength I had, I forced myself to get caught up and graduated with honors in June.

By the time I started College in the fall of 2002 I started feeling tired again. I had gone off of the birth control pill because it made me crazier than I already was (if that was possible). My weight had stayed the same, no matter what I tried I couldn't seem to lose it, and my skin was becoming progressively worse. I tried acupuncture, which worked for a time. My skin started healing and looking a lot better. But shortly before graduation in June 2003 it suddenly flared up again as badly as ever. Once again I went on the Accutane to keep it under control.

I spent the summer looking for work, and then working as a sales associate before returning to College in January of 2004. My poor health was becoming increasingly frustrating. I was an emotional roller coaster, crying at least once a day. None of the doctors I'd had over the years had been able to help me. They looked at me like I was crazy or making up the symptoms since they seemed to be unrelated and random. I would leave the doctor's office each time feeling belittled and stupid. I started to think that it was all in my head. I was beginning to second guess myself and think maybe I was crazy… Yet I knew that something was desperately wrong.

In the spring of 2004 I knew I needed to take drastic action. (It was around this time that I met my future husband). I was tired of being sick, and sick of being tired! I gave my GP a list of my symptoms, by now I had almost every textbook symptom there was, and demanded to see an endocrinologist. I had various blood tests, and a 24 hour urine collection was done. My blood sugar, cholesterol and cortisol came back elevated, or as my GP put it, "Slightly abnormal, but nothing to worry about". I was 20 years old. How was that not something to worry about? My physician and the endocrinologist put me on the birth control pill once again and told me to go exercise and lose the weight. That was it; I had been dismissed once again as being hormonal and obese. It's not like I hadn't tried to lose the weight, it just wouldn't come off! I was pretty upset at that point, but not ready to give up. I was stubborn; there was more to this than that.

A few weeks later my mother suggested that I see the doctor that she had been seeing at the midlife health clinic. Maybe she would have some clues as to what was wrong. So I went there and had more tests. My blood sugar was so high that I was now classified as insulin resistant, almost but not quite diabetic. I was treading on a fine line. The doctor put me on a different, high dosage birth control pill to regulate my hormones and prescribed Metformin to help with my blood sugar. She was undecided as to whether or not I had Polycystic Ovary Syndrome (PCOS), so she sent me to see a specialist in that field at the reproductive health clinic at Vancouver General Hospital.

After doing more paperwork and getting a referral for an ultrasound of my ovaries, the PCOS specialist did a physical examination, all the while asking me questions that I did my best to answer. She stopped at my stomach, then looked at me directly and asked me how long I'd had the purple stretch marks there. Not that long…maybe a few months. She looked at me and said, "I have a feeling that this is Cushing's".

Soon after, (January 9th/06), I was on my way to see a Cushing's specialist at St. Paul's Hospital. After answering numerous questions and undergoing an extensive physical examination, it was very clear. I had Cushing's. I needed brain surgery. I was stunned. Yet the prospect of not actually being crazy was fabulous! But brain surgery was the last thing I'd expected! Now, we had to determine where the tumor was; more tests. Once again my hormones and everything else was tested. Most were abnormal; some hovered precariously above abnormal. My urine cortisol, which should normally be between 28-276, was at 550.

So I was sent off to do a high and low-dose Dexamethasone Suppression Test. These would help distinguish between Cushing's syndrome caused by pituitary tumors and ectopic (non-pituitary) tumors. First I took an overnight 1 mg low dose of Dexamethasone, in which my hormones didn't suppress. Next I took an overnight 8 mg high dose of Dexamethasone; in this one they did. I almost certainly had a pituitary tumor.

Now I went for an MRI. The technicians had fun trying to find a suitable vein in my arm to inject the dye, but after bruising me several times they succeeded. Unfortunately, but not surprisingly, the MRI came back with everything "unremarkable". Now I got a referral for petrosal sinus sampling, (which is just about as fun as it sounds) - beware of any test that has "sampling" in it. The procedure was performed in the radiology department and only one doctor a St. Paul's Hospital does it. I understood that I'd be under mild sedation but he said no. So I asked him if it was going to feel like "snakes slithering up my insides". He said no, all I would feel would be like I had a bad headache. Boy was he wrong! I normally have a really high pain tolerance, but I felt every inch that catheter moved. When the catheter moved past my heart, I started to feel a fluttering sensation that made me panic. That eventually went away but as it moved up the vein in my neck, my arm suddenly involuntarily twitched. And then the crunching sounds I could hear and feel as it moved into position in my head. (I thought I was going to die!) Repeat blood samples were then drawn at 1, 2, 5, 10 and 15 minutes. Unfortunately my right catheter clotted at 5 minutes. Thankfully, I didn't have to redo the test, my hormone levels were through the roof.

A few months after meeting my surgeon, (one of Vancouver's best), and giving him the "go ahead", I had a surgery date of June 27th/06. My husband's birthday was on the 30th. I was scared half to death. After the list of complications that I'd been read, what if something went wrong?

Everything went as smoothly as it could have. My surgeon and endocrinologist were extremely pleased with the outcome. He had successfully removed the entire tumor. My cortisol dropped to barely registering; my cholesterol/blood sugar was now normal, and any residual lunacy must have been there to begin with!

As a Cushing's patient I realize how debilitating this disease is and how it has affected every aspect of my life. I hate what it has done to my mind and body. I don't like to go anywhere or do anything, due to the way I look and feel. My husband never said a word about my weight or how tired I was all the time, and he still doesn't. But some days are harder than others. In some cases the recovery is just as hard as having the illness. I have osteopenia; and have had diabetes insipidus since about eleven days after surgery. My cortisol is still extremely low - 41, as of May.15th /07 and it has been up-and-down. I've been to emergency a few more times than I'd like because of it. All of my joints ache and I feel like I'm ninety when I get up to stand! But it could have been so much worse. They could have told me the tumor was cancerous, that I had six months to live, to put my house in order. I'm lucky compared to so many of you that have suffered longer, and some that are still suffering. I'm thankful for the man that stuck with me through the worst of it, who is now my husband. To all of you still out there, don't give up. There is light at the end of the tunnel.


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