As I face the reality that I may have another autoimmune disease, I once again look back on the last year and realize all of the symptoms were there, but how did so many doctors miss this?

 

misdiagnosedCaptureIt first started with the sensation that something was stuck in my throat.  It would come and go but at times would become really bothersome.  When I mentioned it to my rheumatologist she passed it off as a side effect to the methotrexate that I was taking and bumped up my folic acid dose. My symptoms never changed. She continued to bump up the folic acid. Again, my symptoms never changed.

 

So, after feeling like I was getting nowhere, I then made an appointment to see my primary care doctor who decided I should have an upper endoscopy (EGD) to have a look at my esophagus. That made sense, as I was also on daily prednisone in addition to a non-steroidal anti-inflammatory medication.  Both of which can cause stomach irritation and ulcers.

 

I met with a gastroenterologist and proceeded with the EGD.  The test showed some mild gastritis, but nothing more.  The gastritis was to be expected with the medications I was on, so we added some omeprazole to my repertoire, and I was hopeful that would take care of the sensation in my throat.

 

Unfortunately, the throat issue didn’t go away and it was becoming annoying.  It was causing me to feel anxious, and with that I started feeling kind of down, like nobody really cared.  Soon, I was plagued with more fatigue than normal.

 

So, I went to see my primary care doctor again.  He looked in my throat and said, I’m not sure, but I think you might have oral thrush.  That made total sense (not uncommon for a patient taking prednisone), so I started the “swish and swallow” routine with nystatin for three weeks.   However, my hopes of feeling normal were dashed as my symptoms didn’t go away.

 

I called my primary care doctor, but he was out of the office.  I made an appointment to see his partner and she decided I had a sinus infection and put me on antibiotics for two weeks.  I didn’t have any sinus pressure, but had a cold a few weeks before and perhaps postnasal drip could be causing my symptoms.

 

I was hopeful and almost excited that we had a diagnosis, and hoped for renewed energy.  The energy never came and my throat issue continued.  I sent the doctor an email, and without seeing me she decided I needed another round of antibiotics. My throat issue continued and I continued with my cycle of worry and anxiety. Then my Raynaud’s started to flare.  It was 95 degrees outside, but I was wearing sweatshirts indoors, as my hands were freezing cold and I couldn’t stand to be near air-conditioning.

 

I continued to “doctor-hop” looking for an answer.  I was told by two different doctors that I had fibromyalgia.  That certainly made sense, it explained the fatigue, but it didn’t explain the Raynaud’s or the recent slow heart rate and slightly elevated blood pressure.  I ate a pretty clean diet, but I had gained about 15 lbs in the last six months.  I had eliminated all forms of artificial sweeteners, processed foods and soda about two years prior, so the weight gain wasn’t making sense.  However, I wasn’t exercising like I had in the past due to the increased fatigue.  I felt like I was in a vicious cycle, and I just wanted it to stop!

 

Not one to give up, I proceeded with my quest to solve the throat issue.  I decided I needed a specialist as the family practice doctors weren’t helping me. I felt like they all wanted to shove medications at me, and were too busy to really care.

 

I had this sense of deja vu, like I’d been down this road before.   It reminded me of when I was first diagnosed with psoriatic arthritis, the endless doctors that misdiagnosed me.  My sausage toes were thought to be Morton’s neuroma. The psoriasis on my scalp was diagnosed as a bad case of dandruff.  My arthritis symptoms were misdiagnosed as polymyalgia rheumatica.  It wasn’t until I had a total hip replacement and the pathology report came back “consider an autoimmune disease” that I was referred to a rheumatologist who correctly diagnosed me with psoriatic arthritis.  My instincts are telling me “something is not right” and misdiagnosis is happening to me again!

 

During this time I moved with my family to another state, so the timing was perfect. I researched for a primary care doctor in my new hometown and decide to pursue an internal medicine doctor.  The very first visit he did a brief exam and palpated my thyroid gland.  He stated it felt a little enlarged so he ordered an ultrasound and some lab work in addition to a chest x-ray since it had been years since I’d had one.  He asked about my last mammogram, bone density scan, colonoscopy, etc. The lab results come back the next day and my TSH was normal, but the T4 was well below normal.

 

He was cautious on his diagnosis until the ultrasound and some other test came back, but stated based on my symptoms, the exam and labs we were most likely looking at Hashimoto’s Thyroiditis, another autoimmune disease!  What?

 

Naturally, being a nurse I started my research and learned that Hashimoto’s is an autoimmune disorder in which your immune system attacks your thyroid gland.  Doctors don’t know what causes your immune system to attack your thyroid gland but, some theories are that a virus or bacterium might trigger the response, or perhaps it’s a genetic flaw.  Wow, I’d heard all of this before!  As I read about the risk factors I learned that often the person has another autoimmune disease such as lupus, type 1 diabetes or rheumatoid arthritis.

 

As I read the symptoms, it all makes perfect sense! Slow heart rate, increased blood pressure, intolerance to cold, fatigue, and the feeling that something is stuck in your throat. Seriously?  How did we miss this? Why didn’t any of the other doctors consider this?

 

If you don’t get answers from your primary care doctor then seek out another, or insist on a referral to a specialist!  Listen to your body and trust your instincts.  It’s your body and you have the right to shop around until you find a doctor that takes the time to listen to you, and more importantly actually touches you and does an exam.  Educate yourself, research the different treatment options, and don’t be afraid to ask questions. It’s your body and you get to decide!

 

Please note that the content of this post reflects the personal experience of the blogger and does not constitute medical advice. Success or failure with a drug, medical procedure, personal fitness program, diet, or psychological outlook is individual. Readers cannot assume that they can replicate any success or failure they read about in a blog. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding your medical condition or medications.

 

Have you ever sought out a second opinion on your autoimmune disease diagnosis?