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More Medical Crazies: Thyroid Madness

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Sometimes doctors miss things. They are as fallible as anyone else. This is why it is important to be a well-informed patient and be in tune with your body’s signals. Sometimes I have to take matters into my own hands. I have autoimmune hypothyroidism (Hashimoto’s). My thyroid has been pretty much completely destroyed by my immune system. This means that I have to take thyroid replacement hormone (Synthroid/Eltroxin/levothyroxine). Here’s the thing about Hashimoto’s: the therapeutic dose of levothyroxine can vary according to a number of factors including seasonal changes and patients’ weight.

When I had my TSH levels checked in January, they were too high, meaning that I was hypothyroid and needed to increase my dose. This is typical for winter. By the end of April, I was feeling extremely jittery and anxious. I was sure it was a side effect of my pharmaceutical frenemy Prednisolone, but I wondered if my Eltroxin dose may be too high, since I usually need less in the spring. A blood test showed that my dose was way too high, and that I was in a state of thyrotoxicosis: hyperthyroid symptoms induced by synthetic thyroid hormone overdose. This can be very dangerous. Here’s the catch: my doctor missed this. He only told me that my tests showed I am still anemic and recommended that I start (or continue) taking iron supplements. I emailed him and pointed out, ever so politely, that my TSH levels were too low. He agreed that I should reduce my dose, but insisted that the point of treatment is to reduce TSH levels as much as possible. I didn’t feel like arguing and figured that I would just get on his nerves if I sent him articles with clinical guidelines, so I kept quiet and did my thing.

I had mentioned to my doctor that I was feeling all the physiological symptoms of anxiety, and it got me a referral to a psychiatrist. There is a difference between physiological anxiety and psychological anxiety. I experience psychological anxiety on a regular basis, and I can turn it off through mindfulness, exercise, biofeedback and cognitive strategies. I was unable to turn the physiological anxiety off. My muscles fluctuated between tense and trembly weak. My stomach crumpled into knots so tight they strangled its thriving butterfly colony. My heart was racing and pounding. Sometimes it felt like it skipped beats and I got lightheaded. My hands and voice were shaky. I was so fidgety, I understood the expression “jumping out of my skin.” I couldn’t sleep. I was so sure it was the Prednisolone, or maybe unusually strong nerves about starting clinicals. I tried every relaxation technique I’ve ever learned. I halved my dose of Wellbutrin (antidepressant) since anxiety can be a side effect. The physiological anxiety only got worse, and I couldn’t convince my doctors that it was not psychiatric anxiety.

The breaking point came at the end of the first week of May. My ears were buzzing, ringing with what sounded like tinnitus. Thursday night, the buzzing in my ears got so loud and the pounding of my heart so strong, that I had an epiphany. Those are symptoms of high blood pressure! I had to do something. Beta blockers! I had to get my hands on some Beta blockers. That thought came out of left field, but it made sense. Beta blockers reduce blood pressure and are also used to treat the physical symptoms of anxiety. I got my blood test results the following day and noticed the low TSH levels that the doctor missed. I had my answer. This was not psych anxiety. It was 100% physiological. I was right. I immediately reduced my Eltroxin dose after consulting with my pharmacist. (My email to my doctor was a formality, so he would have it on record.) I asked the pharmacist if I could safely take Beta blockers with my medical profile, and how long it would take for me to feel an effect from reducing the Eltroxin dose. Her answer: “Yes, you can take them. It will take two or three weeks to feel a difference. Ask your doctor for a prescription.” Yipee!

Remember, I hate pills and worry about side effects, but in this case, I reasoned it was essential to bring my blood pressure down. My usual blood pressure varies from 90/60 to 110/70 with a heart rate between 55 and 70. It was 146/87 with a heart rate of 109 BPM, and I felt very uncomfortable. I skipped consulting my doctor, as I got worried that he a) wouldn’t agree with me, and b) would dismiss my worries and chalk them up (again) to psych issues. I swiped a ten-day supply of Tenormin (atenolol) from my mom and self-administered according to a tapering schedule. It worked! Almost immediately! I realize that some may think it was foolhardy, but I took the necessary precautions, did my research, and would do it the same way again if I had to. It took a pill to get the physiological anxiety under control.

What was my reasoning for self-medicating in this way? Well, Beta blockers are standard treatment for thyrotoxicosis and hyperthyroidism symptoms. I didn’t trust that my doctor knew this, and I wasn’t about to suggest it and imply that I knew better and get on his nerves. I still respect him as a doctor and realize that not all doctors know everything about managing thyroid issues. I will let him know what I did and why next time I see him, and I did let my Boob Doc know (as well as the shrink they sent me to). Beta blockers are prescribed to people with performance anxiety (public speaking, test anxiety, etc.), to be taken on an as-needed basis. They can’t be that dangerous, if that is the case. They are used in the treatment of anxiety, especially for people who, like me, don’t tolerate benzodiazepines (Valium, Xanax). Am I happy that I had to use them? Of course not! I’m thankful that I knew to use them and had access to them. (Sorry, Mom! I’ll replace what I swiped.)

The real question here is: how did well-trained and competent doctors miss my fast slide into thyrotoxicosis? How could this have been prevented? The answer is so simple, it makes me want to cry. Nobody noticed my rapid weight loss. When you go to the doctor in USA, it is standard procedure to have the following measured and recorded at EVERY SINGLE APPOINTMENT: weight, blood pressure, heart rate and respiration rate, and temperature. You are also asked to report what medicines you take and their doses. This is not standard procedure in Denmark. If it were, this may not have happened. If I hadn’t caught this, nobody would have. Think of how many patients don’t pay attention to this kind of thing. Think of how many resources go to waste because of this: lost work days, extra medical tests, more medications, etc. Pharmacy 101: dose according to weight. A 15% weight reduction is significant enough to reconsider dosage, especially with thyroid replacement hormone.

So, my thyroid madness and prednisone psycho-ride landed me in a shrink’s office. I am happy to report that after a 90-minute session and a thorough medical history (I made a spreadsheet), the psychiatrist did not try to commit me. Even when I fessed up to self-medicating with Beta blockers. She said that from a medical standpoint, it was proper treatment. (Yes!) She said that there is no evidence that I am a hypochondriac and that I definitely do not have “sickness anxiety.” I just happen to have a number of chronic medical conditions which she attributes to a “sensitive constitution.” These somatic conditions, along with the drugs used to treat them, cause emotional reactions. I get stressed out and depressed when I get sick. Who doesn’t? I did not walk out of there with any new diagnoses or prescriptions, and she agreed not to change an antidepressant that works well and has practically no side effects. I agreed to keep seeing her to work on coping strategies and to work towards getting off my antidepressant some day (or accept that I will have to take it long-term due to my “sensitive constitution”).

As I chronicle this illness, I find that I have no problem discussing my physical conditions and the drugs used to treat them. I’ve even become brazen about discussing my boob and all its follies. It is still incredibly difficult to make it known that I take an antidepressant and have been referred to treatment by a psychiatrist. There is a shame in that which I cannot shake. I want to keep it hidden. I don’t want people to know, yet I’m out of the closet with it. I tell myself what I tell others in need of psychiatric meds and treatment. I try to see it through my perspective instead of through the judgemental lens I imagine “society” sees it. I do not judge or disdain others in this situation. In my mind, there is no divide between somatic and psychiatric conditions. They are equally valid, authentic, painful and deserving of treatment, respect, acceptance and understanding. This fear, this shame, this stigma and taboo are rude guests who have overstayed their welcome. The only way to kick them out is to shine a light on them. And remember what George Bernard Shaw said: “If you can’t get rid of the skeleton in your closet, you’d best teach it to dance.”

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About A.K.

I am: dreamer, mother, wife, daughter, sister, friend, writer, reader, musician, artist, teacher, translator. I am a citizen of the world. These nations are my home: Denmark, Ecuador, USA, Canada, France and Germany. I believe the purpose of life is to love, laugh and learn. I am over being upset for getting this very rare disease: Idiopathic Granulomatous Mastitis. Forgetting all the pain and havoc is tempting, but I will honor the lessons it brought and release my resentment. This blog is my way of coping and reaching out to others who may be going through similarly unfair and bewildering experiences.

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