Unraveling mysterious symptoms: My ITP diagnosis

Looking over my shoulder in the mirror, I saw another deep, dark, purple bruise on my right shoulder blade. How did I do that one? I wondered to myself. I scanned my body for other bruises … and counted 11 in total. I sat on the edge of the bathtub and scanned my legs. Tiny red dots littered my legs below my knees. My bruising seemed excessive, but I chalked it up to being anemic. If only I’d known this was the start of a new rare autoimmune disease.

I began having these new health issues in October 2018 after suffering from lupus and anemia most of my life. Lupus is an autoimmune disease that can come in one of four variations; mine is systemic lupus erythematosus. Many of my 2018 symptoms were the same as my typical lupus symptoms. They included fatigue, bruising, rashes when stressed, and hair loss. I also experienced immune system weakening, resulting in common illnesses such as bronchitis, colds, strep, or the flu.

Despite my illness, I’d always been active: Chasing around my two young boys as a single mom, running a 7,000-plus-square-foot preschool I’d opened in 2014, extreme couponing, and even embarking on a weight-loss journey. So in 2018, when extreme fatigue struck me, it was concerning.

I was exhausted no matter how much I slept. I’d fall asleep at the wheel though I’d been driving no longer than 10 minutes. I also developed bruises all over my body that weren’t healing. Nothing tasted right, and I could always taste metal or blood in my mouth. I also had several nosebleeds. Lastly, I’d developed strange little pink dots all over my legs called petechiae that differed from my usual lupus rashes.

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Diagnosis is a blessing and a curse

I had a gynecology appointment coming up, so I messaged the doctor about my symptoms, and she ordered lab work. Then I received a call from the office before my appointment saying my labs were concerning enough that she wanted me to head straight to the Medical University of South Carolina.

Once there, they did labs — the previous ones were now a week old — plus a barrage of other tests. Drawing blood was difficult and painful. It felt like my skin was being sucked into the tubing each time. I didn’t fully understand what they were testing for, but I realized many of the tests were part of a “process of elimination.” Whatever they wanted to test for didn’t have its own test. So the testing identified what I didn’t have.

They conducted interviews asking about my symptoms. As I answered questions, the situation seemed worse and worse. Several of my symptoms had become my new normal, but I realized they sounded pretty bad as I said them aloud. “I have 11 new bruises, but I’m anemic,” “I’ve been falling asleep at the wheel daily, but I’m probably not sleeping enough,” “I’m losing weight fast, but that’s only because everything taste like metal.”

Throughout the day, several doctors came to discuss lab results with me. My hemoglobin was 6.1 (normal is 12 to 15), platelets were 57 (normal is 140 to 440) and my red blood cell count was only 1.2 (normal is 3.8 to 5.4). I was apparently very sick. Then they slapped me with a long word I’d never heard of: thrombocytopenia. My body didn’t have enough platelets, and they didn’t know why. Aside from the bruising, rashes, nosebleeds and fatigue, I had no other discernible symptoms that would suggest a cause.

Within minutes, I was signing safety waivers to allow blood transfusions. They said the most important thing was getting more platelets and blood back into my body, and then stopping me from losing them again. Next, they searched for a cause. Having lupus was a plausible answer. A severe lupus flare may be causing my immune system to attack my platelets. This led to my second official autoimmune diagnosis: the bleeding disorder immune thrombocytopenia (ITP).

What did this even mean? Was it permanent? Was it serious and life-threatening? I had so many questions, and everything was happening so quickly. The next couple hours were a blur. I had to arrange pickup for my children because I was two hours away. I received four blood transfusions since my numbers were so alarming. Nurses and doctors were in and out, arranging future blood transfusions at a local clinic, prescribing lupus medication to get my flares under control, and so on.

Being diagnosed with something is a blessing and a curse. It was great to have an answer so quickly. But it was daunting, overwhelming, and scary to not only have a disease thrust upon me, but a rare one at that. At the moment, my prognosis was optimistic, which eased my mind a little. Little did I know it was just the beginning of an even bigger journey ahead.

Note: Bleeding Disorders News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.