From Bad to Worse
So much has happened since last week and I am sad to say that the less exciting week that I had hoped for failed to come. If last week was bad this week was worse.
After my diagnosis and subsequent prescriptions I began taking the Levothyroxine (the med for hypothyroidism). On the second day of taking the pills my hands and feet began to itch but I assumed it was due to my body adjusting to having thyroid hormone in my system. I thought "no big deal." Over the next few days the itching spread to all over my body and five days later it turned into hives. I went to bed on Wednesday night defeated, knowing that something was wrong and that my prescription was somehow off.
That next morning I was awoken at 5.20am with a huge adrenaline rush and a heart rate exceeding 150 beats per minute. Now, that is my heart rate when I run a 5k or do Insanity so I immediately knew there was a major problem. I sat in our bathroom practicing deep breathing and other relaxation techniques but after ten minutes nothing was helping. It felt like my heart was going to pop out of my chest. I awoke Mark. He took my pulse. Again it was around 150. As we were debating going to the ER the shaking began. Out of nowhere I began to shake uncontrollably on my right side. It was at that moment we decided to pack the kids up and go the Littleton Hospital ER.
As Mark dressed and settled the kids I sat in the bathroom with no control of my high, irregular heart rate or the involuntary shaking of my body.
It HAD to be the Levothyroxine. There was no question in my mind.
Once admitted to the ER with tachycardia, arrhythmia, and tremors. Blood was taken to be tested and a head CT scan was ordered (why is still beyond me), and IV Benadryl was administered. Mark and I talked to the PA and told him about Dr. Grumpy (who is going to be renamed Dr. Who-Needs-To-Go-Back-To-Medical-School) and, in a very unprofessional but appreciated manor was told that this particular Dr. had a reputation and that many people wished he would be removed from the Littleton complex. This opinion has also beed echoed by a medical professional who I am right now indebted to as she has been the only person to fight to provide me accurate medical information. Her name will be NP Ninja-Hero. After learning about my recent hypothyroid diagnosis and reviewing bottle of medication he left to talk to Big Ol' ER Doc- Another man I am not a big fan of at this moment.
Why am I not a big fan of Bio Ol' ER Doc you ask? Let's start with the fact that he never actually came in to talk with me. We can also add in that the only time I did hear from him he stood in the doorway and told me straight up that the medication was NOT the cause of my tachycardia, arrhythmia, and tremors. That is right, he told me the only thing wrong with me was a slight Magnesium deficiency and that my symptoms were simply unexplained. In fact, he was so sure that Levothyroxine was not the reason for my symptoms that a thyroid workup was not even included in the blood tests that were ordered. I was discharged after a clear CT scan and was told to continue with my meds.
Well done Big Ol' ER Doc.
Although my heart rate had, for the most part, leveled out to a non-impending-death rate (yes, that is a little bit of sour sarcasm) and the tremors went down on its own. I was still having low level shakes and constant adrenaline rushes that would start at the top of my stomach and slowly spread throughout my chest and stomach. I could not walk up a set of stairs without my hear rate raising and I would spend the next 48 hours constantly watched by either Mark or Erin. I
was NOT better, I was NOT going to continue taking Levo, and I NEEDED answers.
I called two nurse lines. Both told me to go back to the ER.
Because the first trip was so helpful.
I called the off hours emergency number for Dr. Who-Needs-To-Go-Back-To-Medical-School and was told to call the next day during normal hours.
Great advice. Really, very helpful.
Did I mention that the exact symptoms that I was having are listed on the prescription packet under the 'CONTACT YOUR DOCTOR IMMEDIATELY IF...' section.
Why didn't anybody connect this!?
I was frustrated. I knew something was going on that was not being explained by the nurses or doctors that I had talked to. And I knew that continuing with the medication was not an option for me.
Thankfully, we know NP Ninja-Hero, and Mark reached out to her for advise.
The first question she asked me was "What is your T4 number?"
Me: "My what? I have no idea. I was never tested for my T4?"
NP Ninja-Hero: "What! You were diagnosed and prescribed medication without a T4 test?" (It may not have been said exactly in those words but you get the picture.)
It turns out that in order to diagnose hypothyroid you need more than a TSH number as they fluctuate with stress and life in general. And, even if you looked at my TSH number it is not even that high at 4.2. The fact that I was weening my youngest coupled with the stress over the past year could have been enough to inflate it. This means that there is a strong possibility that I might not even have hypothyroidism. NP Ninja-Hero also found out from the pharmacist in her practice that allergic reaction to the pink coloring used in Levo is a very possible reaction. Together NP Ninja-Hero and the pharmacist stated embarrassment at the way the Littleton ER handled my case.
With their help, over the past few days, we have narrowed it down to two possibilities of what happened to me.
The first possibility: That Big Ol' ER Doc was wrong when he adamantly denied a correlation between my symptoms and Levo. You know, the same symptoms that are listed on the medication instructions. I may be allergic to the pink dye used in the pill as it is not an uncommon documented reaction that he should have been aware of according to NP Ninja-Hero's pharmacist. In that case I should have been told to stop taking the pills immediately.
The second possibility: When Dr. Who-Needs-To-Go-Back-To-Medical-School, diagnosed me using just my TSH number and neglected to take into consideration my current stress level or the hormonal changes from weening, then failed to conduct follow up blood tests- he misdiagnosed me. This would mean that the whole time I was taking Levo I was overloading my body with thyroid hormone until my body could no longer function properly. This overdose caused the itching, tachycardia, arrhythmia, and tremors. I was even told that it was a good thing I was young and healthy because this episode, or thyroid storm, could have caused a heart attack or even killed me.
It has now been four days since I have taken Levo and at this point in time I am still coming down from whatever reaction I had. The heart issues and adrenaline rushes are gone as well as the tremors but the itching has come back with a vengeance and brought it's friend mental spaciness.
Slowly I am getting better.
I plan on finding another general practitioner and receiving a full thyroid workup. Once I get the results I will know for sure if I was allergic to the dye or if I overdosed on a medicine I should have never been prescribed in the first place. No matter the cause, the one thing that I have learned from this all is that it is so important to advocate for yourself. If something feels wrong don't blindly accept it. Research, ask questions, and do not give in. Our health is all we have and we have to be the keepers of it.