• Staci Gulbin, MS, MEd, RD

Making Progress: When the Doctor Won't Listen Part II

It's been several weeks since Iast posted. Since then I had a 1.5 week visit to Maryland and started a new job as an intermittent dietitian at a local hospital. It's been busy, but in the midst of it there has been some progress in my diagnosis journey.


The last time I wrote, I was hoping to book an appointment with an endocrinologist at Johns Hopkins. I filled out all the necessary paperwork, and sent it in a few weeks before my trip to Maryland. Unfortunately, I should have started sooner. When the hospital concierge responded back to me, the next available appointment was in November. I was only going to be in town from September 26- October 9th and I didn't have the money to fly up twice this fall. So, I started calling every endocrinologist over 4 stars on HealthGrades to see if I could book an appointment. No luck. The earliest appointments were in November and December.


About 15 minutes before my plane was to leave Denver on September 26, 2018, I decided to make one last ditch effort to book an appointment. I called the University of Maryland Endocrinology Office that was about 5 to 10 minutes from my parent's house where I would be staying. The receptionist that answered took all of my information and asked when I would like to be seen. When I told here I would only be in town for a week and a half she said, "Well, the next available appointment is around November, but there is an opening today at 12:45pm. Someone must have cancelled." My plane was supposed to land at 12:30pm. It would be cutting it close, but I took a chance and grabbed the appointment. I thought it was meant to be and prayed that I would make it in time.


As I sat down in my cozy seat (to put it kindly), I heard the pilot on the loudspeaker. The flight would be landing early. Did I hear that right? It would be landing at 11:45am? This was a miracle. I would have plenty of time to get to my appointment. The airport was just 15 minutes from my parents' house and then another 10 minutes from the doctor's office. I texted my mom to let her know and she would be there to pick us up, drop my bags off at the house, and drop me off at the doctor.


Fast forward to the doctor's office, I sat in the waiting room for my turn about 30 minutes early. My hands were shaken and I felt sick to my stomach. I guess I was just afraid that this doctor would dismiss me like the others and I would be thrown back to square one without any assistance. I had emailed my primary care doctor from Colorado to ask her to order me labs just in case this appointment ended badly.


As I entered the office, I pulled out my binder. I read online at a Cushing's disease blog that doctors will take you more seriously if you have done your homework and organized all of labs, symptom list, and timeline of your symptoms as well as pictures of you over the past several years. The pictures were never seen, but I did give copies of my labs to the nurse who took me back, and once the doctor came in, I handed her my symptom list as we talked about my symptoms. I told her she was my third opinion and I think that put a fire in her belly to find out what was going on with me.


She ordered initial labs checking for inflammatory markers like C-reactive protein, Trans-glutaminase (celiac disease marker), anti-nuclear antibody test for autoimmune conditions like lupus, a midnight salivary cortisol test, and an erythrocyte sedimentation test, among a few others. Fast forward a few weeks, and my results came back. The labs were all normal except for the CRP lab which was slightly elevated. I researched online and found that this elevation of CRP could be a result of inflammation from irritable bowel syndrome, or thryoiditis. Although just to be sure, I emailed my new Maryland doctor through the portal.


I asked her about what the lab result meant and what we could do next. I asked if adrenal or hormone labs could be done. She responded back a few days later and said that the elevated CRP could be due to a mild infection in the body, but she would be willing to check a few adrenal labs just to eliminate this possibility. She mailed the lab orders out and I just got them a few days ago. She ordered a good list of labs including serum cortisol, ACTH, DHEA, and a few other hormones. I haven't gotten them done yet because 1.) They are fatsing labs and I have training for my new job that started last week and goes through to the end of next week from 7-4. The labs don't open until 7:30am and are not open on weekends. 2.) I researched a lab reference and it said that the DHEA lab and cortisol labs are most accurate when done during the follicular phase of the menstruation cycle, which for me does not start again until the beginning of November. Therefore, my lab appointment is scheduled for November 5, 2018. I am counting down the days.


I have not heard from my primary care doctor and it has been about 3-4 weeks since my email through the portal. Either she is ignoring my questions due to being busy, not getting my messages because the portal is not working, or she is dismissing my email because she thinks I am a hypochondriac. Whatever the case may be, I am not letting it bother me. I am going to carry on with the doctor from Maryland and as I lit a candle in church a few weeks ago, I prayed and still do pray that by Christmas day I will have a diagnosis and will be able to get help for my condition so I can start the new year off healthy and strong or at least on my way to that goal.


In the meantime, I stay hopeful and try to be as active as possible and eat as healthy as possible. Although my neck pain is getting worse and a simple walk in the park is causing me to become out of breath, I just take some ibuprofen and try to deal with it. I have a small inkling that my thyroid nodules are growing and putting pressure on my voicebox, in turn contributing to my shortness of breath, but there is nothing I can do about it now. I am hoping my labs this time around will find me answers so that when I go back to get my thyroid labs checked again at my primary care doctor's office in December that I will have something to tell her so she will help me. Otherwise, unless my TSH breaks the 4.5 barrier, she will surely dismiss my symptoms as the others have done.


Outside of this health journey, life couldn't be better. I have been used as a nutrition expert for several well-known online magazines like Insider, Brit + Co., and Shape, I got a great intermittent dietitian job at a local hospital with a great group of girls, and me and my husband are enjoying the fall season and finally feel settled into our new home in Colorado. I am truly blessed and will never take any of this for granted.


Me and my husband have overcome a lot of obstacles during our 7-year marriage: 3 job layoffs between us, job-related depression and anxiety for both of us, and a slew of financial difficulties, to make a long story short. I am confident that no matter what new obstacle life may throw our way with my health journey that we can overcome. Just remember that if you stay positive, faithful, and hopeful, you can get through just about anything.


I will keep you updated and look forward to talking again soon. Thank you for being my sounding board and allowing me to vent my frustrations and concerns. I hope that my story will help at least one person out there so you know that you are not alone. Fight for your health. You deserve to feel the best that you can be. Until next time.


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