I will start by saying this is not medical advice, I am not a professional I am a patient. I write about my personal experience, Every body is different.
I was first diagnosed with adrenal insufficiency while I was going back to school to become a hairstylist. I started to feel fatigued, lightheaded, foggy-headed, and sharp pains in my left flank. After "dealing with it" for a little bit I went to my GP and asked WHAT IS WRONG! He ran tests, the standards. My blood pressure was extremely low, and my electrolytes were out of whack so he attributed it to dehydration. That the fatigue was because I was a busy mom of three going back to school.
After a few weeks I did not feel better, I felt worse. So, as I have said in my other posts I went to Dr.Google.... WebMD.... you know everything you are not suppose to do. I went to him with information on Addisons Disease, and asked for my cortisol, and aldosterone to be checked. This is where the specialists come in.. the run around.. the adventure.
I was referred to an endocrinologist, and had the ACTH test done to determine if I indeed had Adrenal Insufficiency. And that is how the steroid war began. I was prescribed 30mg Hydrocortisol. (10mg three times a day) without any information on how to care for myself. Over the next several months I still did not feel any better. I wasn't thriving at all.
The exhaustion I felt by 1pm was indescribable. Sometimes I couldn't move my hands, let alone hold a pair of shears to cut someones hair. My legs would go numb, and I fell a lot. I started having issues with slurring my speech (I started to think I had something else going on, or I had a stroke). My drive home from school was always a haze. Most times I did not remember how I got home, or I would catch myself falling asleep/passing out. I drove with my window down to try to stay alert. It was not safe to drive, I lived in a constant state of fear.
At home I had stopped doing everything. Cooking.. Cleaning.. interacting with my children, friends, and family. Matt thought I did not want to be there with him and the kids, so we fought a lot. He did not have an understanding for what I was going through, how could he when I didn't know what was going on with me. Most times you look healthy. It is often the case with most invisible illness'.
Time to switch doctors. I went to my first visit thinking he had to know SOMETHING. He was previously at the U of M, so I had hope.
I went armed with more information, more research. I knew I needed to find out if I had PRIMARY or SECONDARY Adrenal disease. I knew I needed to find out if I needed a mineral steroid, Fludocortisone added to my medication list. This medication helps regulate your electrolytes and blood pressure. I also knew I needed an emergency injection kit.
The appointment was a disappointment. He wouldn't prescribe the emergency injection kit, which is live saving. He said I was too pretty to be on a high dose of steroids, I looked healthy and tan so my vitamin D was good no use in testing it (hallmark sign of Addisons Disease is tanned skin). He did not think Fludo would help, and he proceeded to tell me my adrenal insuffiecancy was caused by a brain tumor. Before he bothered doing an MRI!
I was defeated, and hopeless again.
By this time I was so unstable I was having crisis' 3-4 times a month, I would work 2 days a week but stay in bed the rest of the week because I needed to recoup. I stayed with this doctor a few months hoping he would figure something out. BTW it was not a tumor, but I still had no more information.
Time to switch doctors. This time my husband suggested the Cleveland Clinic.
My first appointment with my doctor at the Clinic was emotional. She walked in and was a breath of fresh air. Within 15 minutes she looked at all my lab work & tests, and had a diagnosis. Primary Addisons, due to autoimmnity. By the end of the appointment I had blood test s ordered, Solu-cortef and Fludocortisone prescribed.
Part two of the pump will be my decision to push for it, the struggle to get the pump, and the reseach it took myself, and my doctor to make it happen.
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