The last few months of 2020, I felt off. I blamed it on my chronic fatigue at first. But after listening to my body and noticing some very abnormal symptoms, I brought up my concerns with my gastroenterologist.
In this blog post, I share the six signs that pointed toward iron-deficiency anemia, and four ways I advocated for myself when my doctor didn’t believe me.
6 Anemia Symptoms I Experienced
I live with three autoimmune conditions and chronic fatigue, so feelings of tiredness and weakness are not new to me. But, when I got up from my bed one night in October and nearly collapsed to the floor, barely catching myself on the wall, I knew something was wrong.
This was the turning point for me and made me realize that my odd symptoms had to be something other than my chronic fatigue.
1. Extreme headrush
I’ve always had moments of headrush throughout my life, but at the end of 2020, they were really bad. I would simply stand up from a chair and I’d get dizzy, my vision would get cloudy for a few moments with that TV static feeling. I would always need to pause a few moments with my eyes closed and holding onto the wall or the counter for the dizziness to pass.
2. Frequent and terrible headaches
I rarely get headaches. But when my symptoms were at their height, I was getting multiple headaches a week. And not little ones, either. They were the nauseous kind that make you feel like you’re swimming.
3. Heart palpitations
I’d randomly get these freaky skittering heartbeats. I wouldn’t even be moving—just sitting at my desk! Here’s the best way I can describe it. You know that dip in the pit of your stomach when you go down a rollercoaster? It felt like that but in my chest. It felt very unnatural and a little scary.
4. Cold hands and feet
I mean, I’m always cold. But this was a different kind of cold—like a bone-deep frozen feeling in my hands (and sometimes my feet) that just wouldn’t go away regardless of the number of layers I wore.
5. General weakness and fatigue
Everything I did just felt heavy. Walking up the stairs. Putting sheets on the bed. Picking up my cat. It all took extra effort and left me fatigued after doing the smallest things.
6. Difficulty exercising
I hardly worked out the last few months of 2020 because I could hardly tolerate it. Lifting weights just gave me constant headrush. Walking a mile around our neighborhood left me winded and feeling like my heart was going to explode. Even walking up the stairs in our house gave me headrush and a pounding headache at my temples.
4 Ways I Advocated For Myself to Get the Treatment I Needed
Once again, it was time to take my health into my own hands. There were for things I did to advocate for myself and get the care I knew I needed.
1. I called my doctor and explained my symptoms
Once I determined these crazy symptoms were something other than my chronic fatigue, I looked up my most recent blood test results that I get every eight weeks. Sure enough, my hemoglobin and hematocrit were low, which is common in people with anemia.
So I called my GI’s office and spoke with his nurse, explaining my symptoms, blood test results, and my theory that I might have anemia.
The nurse called me back the next day after speaking with my GI and—I kid you not—said, “He doesn’t believe your symptoms could really be that bad since your blood tests show you might only be slightly anemic.”
Honestly, I was pissed. My GI thought I was exaggerating my symptoms.
2. I asked my doctor to order me a full iron panel even though he didn’t believe me
I couldn’t believe how my doctor just brushed me off like that. But I knew my body and I knew I was not exaggerating. So I asked my nurse to have my GI order me a full iron panel.
Shockingly, he agreed, and I did this blood test soon after.
When I saw my results pop up on my online patient portal, I laughed out loud because this iron panel proved me right. Not ONE test in the panel was within normal limits. Most numbers were 2 to 3 times higher or lower than they should be, and my iron saturation is 4 when it should be at least 15!
3. I called my doctor multiple times when he never called me to discuss my iron panel results
Can you believe that? I was sure that he’d read my results and call me right away to get me on an iron supplement. But nope.
I called my doctor’s office multiple times, and each time, the nurse promised she’d pass along the message and he would call me shortly.
After a week and a half of waiting with no call from my GI, I stopped waiting and explained the whole situation to my liver doctor.
4. I told another doctor in my medical team and she prescribed me the iron supplement
Once I accepted my GI was not going to call me back about this, I explained the whole situation and my worsening symptoms to my liver doctor who helps me manage my primary sclerosing cholangitis (PSC). She’s also a GI.
She recognized the urgency of the situation and ordered me an iron pill right away and I picked it up at my pharmacy a few days after.
I now take ferrous gluconate iron pills, 324 mg (with 38 mg of elemental iron). One pill three times a day. And I feel absolutely fantastic.
You Are Empowered
Being a chronic illness patient is already difficult, and when your doctor doesn’t believe you, it makes it so much harder. I hope you don’t experience a situation like this, but I know many of us do.
If this happens to you, don’t forget that as the patient, you are empowered! Even though it may not feel like it, you really, truly are. You might need to get creative and think outside of the box in order to get the care that you need. And I know it shouldn’t be this way, but it is.
Once you make peace with that, it clears up brain space for you to take action to get the care you deserve.
Never feel guilty about advocating for yourself!
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