For anyone interested in the radioactive iodine treatment instructions I received from the hospital back in 2014 (for the post-surgical treatment of thyroid cancer)(which I’ll be going through again), here you go. As I note in the image, as a writer I appreciate the strong finish. :)
As I’ve learned over the last several months, getting Thyrogen for thyroid cancer treatment can be extremely hard, if not impossible or incredibly expensive. These nine pages of notes to my doctor, my insurance company (Blue Cross/Blue Shield), specialty pharmacies like AllianceRx (Walgreens), Accredo, CVS specialty pharmacy, and the Thyrogen manufacturer, over a period of five weeks demonstrates how hard it is to get Thyrogen when you need it.
After going through all of this, my best suggestion is that if you’re having a hard time getting Thyrogen for your thyroid cancer treatment, call the people at thyrogen.com (ThyrogenOne). Because a lot of patients have a hard time getting Thyrogen, they seem to understand the process better than anyone, including my doctor’s office and my insurance company.
This is a note that I originally posted here in 2014:
I learned yesterday that my endocrinologist wants me to take a dose of radioactive iodine in about two weeks as a followup treatment for the total thyroidectomy surgery I had two weeks ago. I did some research before and after my meeting with her, and was surprised/amazed to read things like this.
This is the amino acids supplement chart from the excellent book by Julia Ross, The Diet Cure. With this chart you look at the first two columns to find whatever “deficiency” problems you may be having, then look for the amino acid supplement(s) that are known to help with those problems.
I originally learned about this when my thyroid was failing in 2011. L-tyrosine was a major help in living through that problem.
Dear Diary: Day 20 of not having a thyroid (because of thyroid cancer), not taking thyroid medicine, and the low-iodine diet.
I didn’t know if a person could lose weight without a thyroid, but I’ve dropped six pounds so far. In all I’ve dropped 20 pounds since I finished writing the Scala Cookbook (when I was working around the clock, not exercising, and eating crap).
Blood pressure is usually about 96/56, heart rate 48-54 BPM, and that’s without taking any heart meds. (I’d pass out for sure if I took those.) Low on energy and can’t take my usual long walks without getting the shakes.
Hopefully I’ll pass the blood test on Wednesday — my TSH level needs to be 30 or higher — so I can start the radiation treatment.
~ a note from June 16, 2014, after having my thyroid removed
From my endocrinologist (May, 2018), “For people with a history of thyroid cancer, keep the TSH level in a range of 0.1 to 0.5.”
My previous dose was too high, and my TSH level was basically 0.0 (which I could tell because my heart was racing), but by reducing the synthroid/levothyroxine dosage, it’s now in that range once again.
About five years ago, when my thyroid was first failing, I went through something known as Hashimoto’s disease. What happened was that at some times I would become hyperthyroid (and therefore hyperactive), but most of the time I was hypothyroid, meaning that my brain and body were slow and sluggish.
Nine times out of ten I was sluggish, so one day when I had a job interview I decided to drink some Red Bull. I had one drink an hour before the interview, and drank the second one just before the interview.
Sadly, on this occasion my body decided to have that “1 out of 10” day and be hyperactive. Combined with the two Red Bull drinks I couldn’t sit still or think. I’m sure the people conducting the interview thought I was on speed, and more than once they told me I could relax. I wanted to tell them, “No, I can’t. I really can’t.” By the end of that miserable interview I was just glad my heart didn’t explode.
At the time this seemed like a really bad event in my life. I didn’t know what to do about my thyroid, and I felt miserable. I was at a real low point, especially in my professional life.
Fortunately one of the next things I did was to send an email to the O’Reilly folks asking if they needed someone to write the Scala Cookbook. They said yes, and the rest is history.
Looking back on that interview, I now think that if I had done well that day I might have been forced to work with Java for the next few years. Instead, I’ve been able to work with Scala ever since that day. I got to write the Scala Cookbook, and now I’m working on a book about Scala and functional programming. With the mast cell disease stuff I just went through I would have never been able to work at a “normal” job, so all of this turned out to be a blessing in disguise.
Moral: One some days things in your life can look bad, really bad. But if you keep your chin up and keep working hard, good things can still happen, and in the end that bad day can be the best thing that ever happened to you.
After a routine phone blood test I got an unexpected phone call from a doctor last night. You know, that phone call you never want to get from a doctor. That one.
If you ever wondered how much it costs to have your thyroid removed, the answer seems to be $33,000. And that doesn’t include the costs of everything else related to the process, including initial identification, biopsies, heart tests, radiation treatment, etc. The total cost for the last 4-5 months is probably over $60,000.
I’d pretty much like to forget this spring, and in an effort to do so I’m wiping off the boards I usually use as my “appointment calendar.” So without any further introduction, this is how I spent my Spring, 2014.