Am I a medical anomaly?
Like many of you, I have been fighting for years for help. Sometimes it's a matter of finding the right doctor or getting the right blood tests. I've struggled all these years and been so angry at so many doctors but now I'm starting to see that it really wasn't their fault.
Five years ago, I was diagnosed with an adrenal adenoma. As most of us do, I researched everything I could. I was sure that I had Cushings but no one agreed with me. My dexamethasone cortisol test was done incorrectly by the lab. No one believed me then either. I was refused surgery to remove the adenoma because my blood work didn't show that I would receive any relief from the surgery.
Two years ago, I was hospitalized multiple times for hypokalemia. The kidney doctor and surgeon were willing to do the surgery but my endocrinologist was not approving it and I was so angry. Over the past two years i've suffered from extreme fatigue, weight gain, body aches, etc. Last year at my endocrinologist appointment, he told me to look for other causes of my symptoms. I spent $30,000 looking for other causes. Funny enough most of the Specialists but especially the rheumatologist told me to go back to the endocrinologist. I've met my deductible for the year so I decided that it wouldn't cost me anything to tell that endocrinologist exactly what I thought about him. Without any blood work or any other tests , he began to apologize to me. He said that he would approve my surgery but that I still wouldn't receive any relief afterwards. How discouraging is that? Because he thought I was wrong he ordered more endocrinology blood work including around of rheumatology testing. I believe he thought he was going to find the issue and prove to me that I was wrong. Every message from him since has been an apology. If I had gotten angry 2 year agos, I wouldn't have wasted the past 2 years feeling like an invalid.
My blood work shows that I have Cushings and Conn's syndrome. He immediately approved my surgery and referred me to a surgeon. Then the rest of the blood work came back. I also have Lupus. Funny enough, one of the treatments for Lupus is to increase your cortisol. So the Cushings has been treating the Lupus and hiding it. Suppressing my cortisol was the only way it would have ever been found and I got lucky.
Now I'm researching the chances of having Cushings, Conn's and Lupus. It appears to me that no one has ever been diagnosed with all three before. So I'm sure nobody else is going through what I'm going through. If I have the adrenalectomy, then we have to treat the Lupus. I see my surgeon today to schedule it and I'm so nervous.
I guess what I really want to say is don't give up. My anger may have saved me. Don't be afraid to be angry. Don't be afraid to say what you're really thinking. Because you never know, it might be really hard to diagnose you because of other issues.
DONT GIVE UP