 |  | | Jennifer Kerr — Toronto, ON |
| | | In 1979 I was diagnosed with hypothyroidism, followed by vitiligo in the mid-1980's, and finally with Addison's Disease in 1998 at the age of 32. Prior to my Addison's diagnosis, I had been feeling increasingly unwell for 8 years. It started with a strong craving for salt and feeling tired. By the end of the 8 years, I was extremely weak and exhausted, had trouble with stairs, vomited every day, was dizzy and itchy all over, and was very thin and in a lot of pain because every joint in my body was inflamed. My skin darkened significantly but because I had vitiligo, I had patches of very dark and very light skin. Overtop of this, I experienced an extremely high and unrelenting libido, which was anything but 'fun'. I cannot quite put into words what it was like to experience such exhaustion and intense libido simultaneously. I was too embarrassed to mention this symptom to any doctor, and silently endured it. I began to consider suicide to end my horrid existence.
I had been to a well-respected endocrinologist in Toronto and he warned that I might develop Addison's disease because of my other autoimmune problems. A few years later, when the strong salt cravings started, I told him that I thought I might be developing Addison's. He laughed and mocked me! He said "What are you doing? This?" as he pretended to shake salt into his mouth with an imaginary saltshaker. I was so upset and humiliated that I left his office for good. I went to my new GP, told her I was in danger of getting Addison's Disease, asked her to monitor me. In the end, it turned out she had no clue about the disease. I continued to request regular cortisol tests, until the point when she tersely told me that I had mental problems, was anorexic, and did not have Addison's Disease. She had put me on anti-depressants for 3 years and sent me to a psychiatrist (who determined I was not anorexic). I argued for one last cortisol test - and the results came back so low, that she said it must be a mistake and ran the test again. The results were even lower. By chance, she was talking to an endocrinologist (about another patient) and happened to mention my results. The endocrinologist sprang into action - and I was directed to go to her office immediately as I likely had only a matter of hours left to live. I started on the prednisone and florinef that day. But, because I was so far gone, it wasn't enough to turn me around and my heart began to beat erratically during the next two days. I ended up in emergency where the endocrinologist ran the hydrocortisone by intravenous, but I was still not recovering. She gently told me "we’re having trouble keeping you here" and asked for permission to triple dose me with steroids in an effort to shock my system back. I said 'sure'. At that point, I was welcoming the thought of death and being released from my suffering. But, I survived. And, over the next couple of days the pain, nausea, exhaustion and overactive libido started to dissolve away. I could not believe how wonderful it felt to be pain-free. It took about two years to fully recover from the whole experience. I gained 40-50 pounds during my recovery.
Since then, I have been very well. My daily meds include: 15-20 mg of hydrocortisone, 0.05 mg Florinef, 0.112 mg Synthroid and 1.5 mg Estradiol. I control my hypoglycemia through diet.
The support and understanding of my family has also played an important role in keeping me healthy.
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