Thursday, June 6, 2013

Thyroid cancer happenings

I expect to feel not so great as I recover from RAI--radioiodine therapay--and start to come down from my severe hypothyroid state, but I do not expect to no longer move. My body is failing me lately and I know I need time to heal, but on Thursday my heart palpitations felt so scary that I spent the morning lying horizontal on the couch with one hand on my phone ready to call 9-1-1 in case I started to lose consciousness. I was dizzy and foggy and having chest pains. I called my endocrinologist who scheduled me for blood work on Friday and an appointment first thing on Tuesday morning.


After about five hours of feeling like I was having a heart attack, my palpitations and irregular heartbeat normalized again and mama life resumed as usual with baths and snacks and naps and diaper changes.

I walked into my endocrinologist's office Tuesday morning feeling absolutely desperate. I have been so fatigued this month that lifting my arms for even a few seconds is exhausting. I've got about twenty tiny bruises on my legs. Here's a picture of that hotness:


I've had episodes of dizzy spells, painful muscles and joints, numbness and loss of sensation in my arms, hands, feet, and face. Family members and friends have invited me to parties and pools and I've declined because I don't have the energy to barely sit up any longer.

When I say I was desperate as I walked into that office, I mean I was absolutely desperate. If I had the energy to get on my knees to pray right there in that waiting room, I would've done it; I was in need of a miracle.

I've blogged about how I absolutely do not like my endocrinologist before, haven't I?

He's a total jerk. I haven't liked him from the first appointment, but I felt like he knew my history and I was afraid to switch doctors because I'm on this scheduled path: thyroidectomy, RAI, WBS, on meds, off meds, raising TSH, lowering TSH, six month post surgical visit, yearly visit, it goes on and on. If I switched doctors what would happen if the new doctor had to pick up where this doctor left off? What if the new doctor missed something because he hasn't worked with me from the start of my thyroid cancer journey?

But walking into this doctor's office automatically makes me feel as if I am walking into an abusive relationship. This doctor squashes my optimism, and when you have cancer, optimism is pretty important for healing.

He walked in, buried his face in his laptop as I told him that I felt beyond awful. I begged for him to make me feel better. I offered suggestions of what it could be: anemia, low TSH, high TSH, low calcium... and do you know what he said? He said that my symptoms are not related to my thyroid or my calcium. That I should wait and see if things just magically start feeling better. That I should go see my primary care physician because I could have something else wrong with me. This is not thyroid-related.


And I quote, "Most of symptoms she is mentioning are not typical of hypothyroidism or hypocalcemia - so I am not sure if they are related. She should felt whole lot better now as thyroid and calcium levels are both normal range. She should give 1 more month to see if things settle down in a month, she should see her PCP to look for other possible cuases."

And then he stood over me and lectured me that I really should know the dosage of calcium I take and not just the brand name because it took five minutes out of his day to look up that 750mg of calcium carbonate is really just 500mg of pure calcium. Oh, I'm sorry Doctor, I thought knowing what drugs you prescribed me was your job.

I belong to a thyroid cancer support group online and I have talked with many people who are going through the same overwhelming fatigue as me, so how could this doctor tell me that my symptoms are asymptomatic? But sure, I'll play along, I'll schedule an appointment with my general doctor and see what's causing me to feel like a brick.

I stormed out of the office feeling even crumbier than I did when I walked in, as always.


I called my PCP that Tuesday afternoon as instructed and made an appointment for the next day.

Now, I love my general doctor. He has always been attentive and thorough. I trust him wholeheartedly, which is rare for me when doctors are involved. I think it helps that he could be Gene Wilder's twin.


I woke up feeling the best I felt in weeks. Still weak and exhausted, but yesterday I could walk around and felt well enough to take the kids out shopping, even! I didn't have much faith in this appointment, mostly because I didn't think my issues needed to involve my sweet PCP, that these were endocrine issues and my endocrinologist should be the one taking care of me, but I went anyway.


My doctor checked me over from head to toe and actually looked me in the eye when I spoke about how I was feeling helpless and overly fatigued. I told him about my scary heart palpitations and the joint and muscle pain and the bruising. He said, "I'm going to run a boatload of panels on you just to make sure there are no underlying issues, but this to me sounds like your thyroid."


My thyroid. No shit. Why can't my endocrinologist recognize that?

Willy Wonka prescribed me a heart monitor that I will wear for 24 hours starting Monday just to make sure I have no underlying heart conditions to be safe, and will run those blood tests.

I felt so great last night that I danced along to Riverdance with Dylan in the basement and was able to dance through a whole song without getting tired. Mentally and physically, things are looking up!


I have had enough of my pessimistic jerk of an endocrinologist and so I finally did some research yesterday and called a new endocrinologist to set up an appointment. This doctor has great reviews and has been studying thyroid diseases for 32 years. I will go see him for a checkup at the end of the month.

I feel like a giant weight has been lifted off of me.

Today I will call and request that all of my medical records are faxed over to my new doctor. If the receptionist asks why I am switching doctors I will try to make up some excuse about being referred to the new doctor by a family member because I don't want to hurt anyone's feelings by saying, "I'm switching doctors because you're an incompetent fool."

But I'm really not good at lying so I'll probably just tell the receptionist the truth: Lady, you work for a complete ass.