Sunday, April 17, 2011

Thyrogen? Was Here? I Missed It Again.

Polkaroo (if you grew up on Canadian television in the late 1970s and 1980s, you'll understand)

Where for art, thou Thyrogen?

It's hard to not wish I had Thyrogen on a day like today. I slept eleven hours and according to my fiance, I look like I could sleep some more. What is Thyrogen you may ask? Well c'mon. It's only the most coveted over-priced rare med on the market right now. Coveted by thyroid cancer patients worldwide. Over-priced. For a cool $ 1600-2000. And rare. One manufacturer, Genzyme, makes it. No generics, people. And guess what folks? It is fresh out of stock! So far all of you who need to do your Radiation in the American Thyroid Association (ATA) recommended 1-3 months after surgery (like me, I'm at the end of month 3), you'll have to do without. So suffer!!!!!

All drama aside. The Thyrogen ordeal is thankfully over for me. And today, I realized that I have only four more days of "going hypo" before doing the Radiation and then I go into isolation for a while.

Do I sound like a drug fiend, yet? Well, no I'm not. I totally believe in natural healing methods and I am taking my naturopathic prescriptions carefully and consistently. However, nothing can replace the hormones that your body naturally produces. And when you got no thyroid, you got no T3 or T4.

When did my Thyrogen ordeal begin? Well, it all started in February when I was told that because my cancer had spread to 1/3 of my extracted lymph nodes, it was highly recommended that I do the Radiatioactive Iodine ablation or RAI. Also called I-131.

Not I-Threes.

The I-Threes (Bob Marley and the Wailers' back-up vocalists)

Back in November 2010 when I was originally diagnosed, I thought I would only be dealing with surgery. I focused on the surgery. Feared the surgery. Researched the surgery. And kept quiet since I told very, very few people about it. (And look at me now. Me have me own blog.)

So in February, after my surgery, I started to get this feeling. Intuition. Vibes, if you will that yes I would need RAI. So I immediately called my health insurance company to find out if they would cover the cost of Thyrogen. Thyrogen, the miracle drug, would allow me to do the Radiation treatment without "going hypo", that is, not have to go off my thyroid hormone (Cytomel, T3). Why would I want to NOT go hypo? Well, read the symptoms of hypothyroidism (which is when your body does not produce enough thyroid hormone or in my case, NO THYROID HORMONE):
Poor muscle tone (muscle hypotonia)
Any form of menstrual irregularity and fertility problems
Hyperprolactinemia and galactorrhea
Elevated serum cholesterol
Cold intolerance, increased sensitivity to cold
Rapid thoughts
Color sensitivity
Muscle cramps and joint pain
Thin, brittle fingernails
Coarse hair
Decreased sweating
Dry, itchy skin
Weight gain and water retention
Bradycardia (low heart rate – fewer than sixty beats per minute)
Slow speech and a hoarse, breaking voice – deepening of the voice can also be noticed, caused by Reinke's Edema.
Dry puffy skin, especially on the face
Thinning of the outer third of the eyebrows (sign of Hertoghe)
Abnormal menstrual cycles
Low basal body temperature
Thyroid-Related Depression
Impaired memory
Impaired cognitive function (brain fog) and inattentiveness
A slow heart rate with ECG changes including low voltage signals. Diminished cardiac output and decreased contractility
Reactive (or post-prandial) hypoglycemia
Sluggish reflexes
Hair loss
Anemia caused by impaired haemoglobin synthesis (decreased EPO levels), impaired intestinal iron and folate absorption or B12 deficiency from pernicious anemia
Difficulty swallowing
Shortness of breath with a shallow and slow respiratory pattern
Increased need for sleep
Irritability and mood instability
Yellowing of the skin due to impaired conversion of beta-carotene to vitamin A (carotoderma)
Impaired renal function with decreased glomerular filtration rate
Acute psychosis (myxedema madness) (a rare presentation of hypothyroidism)
Decreased libido in men due to impairment of testicular testosterone synthesis
Decreased sense of taste and smell (anosmia)
Puffy face, hands and feet (late, less common symptoms)

Can you guess why I didn't want to go hypo? Yeah. I'll pass. And for someone like me, who has no thyroid whatsoever, some of these symptoms could be even more intense. Especially if you have a history of depression... blue butterfly, anyone? (But my parents didn't name me Nadia (which means HOPE) for nothing.)

Anyway, the woman at the insurance company was like, "That drug is expensive."
"You can't tell me over the phone if it is covered?"
"No, you'll have to do a pre-authorization." So I had to submit my original prescription for Thyrogen to the insurance company and wait 3 weeks for an answer. 3 weeks! Then I called them every few days to only find out from person, yes, I could have done this over the phone but it was too late since I sent in the paperwork and they probably begun the processing.

Prior to this, Thyrogen had issued a notice that said the supply was short but should be resolved in May 2011. Although I read this letter, through the posts on the Thyroid Cancer Canada (TCC), patients were still able to fill the prescription in Canada especially in large cities like Toronto. In fact, I went to Shopper's Drug Mart and the pharmacist there said that he would order it for me. It would take a week. But since I didn't have the original prescription and I thought I had time and it was no way to throw $ 1, 600 into paying it upfront without being certain I would get coverage, I decided to wait for my insurance company to get back to me. After all, May was not too far away.

Then, I finally received the reply in the mail (and after many calls to the insurance company and one in which I just about lost it), they would not cover the $ 1600 medication. They said I did not meet the criteria but they didn't tell me what the criteria was (still to this day even after I wrote back a letter to appeal the decision. Plus I had already sent all of the information they requested with my pre-authorization form.) This was extremely disappointing and upsetting. In the meantime, I had applied to the Trillium/Ontario Drug Benefit which covers medications that are not typically covered my health insurance. Thyrogen qualified and hence I might qualify. (Last week, I received a letter to say that I do qualify for up to $ 1100).

But then on the TCC website, they posted a new letter from Genzyme saying that Thyrogen would not be able until June. Then July. I freaked out. I couldn't wait since I needed to get it by late April the latest. I was so upset and had a tearful conversation with my mother-in-law-to-be. All the posts from other Canadian patients in my online group indicated they had no luck either. She suggested going in person to different pharmacies to see for myself. I went to Shoppers Drug Mart and PharmaPlus and called the pharmacies at my hospital as well as Sunnybrook and Princess Margaret (our city's cancer hospital). No luck. Then I called a pharmacy at a cancer centre in Buffalo, NY. They sent me to call another pharmacy. I spoke with a woman there and she said they were out. Try the end of April. So I called my uncle who is a pharmacist in the Bronx. (I heard that a patient might be able to get Thyrogen in Florida.) No luck. He said he called over the city to different pharmacies/warehouses and they either did not have it or did not hear of it. I called Genzyme USA and they said they were fresh out.

I was tired out and extremely frustrated. My anxiety-level from waiting at home for answers which took weeks to come was at an all-time high and I did not feel that there was nothing else I could do. Besides, I was also fighting two other battles: Getting a second opinion for my radiation dosage from another specialist (what an ordeal!) and appealing to get sick benefits. (I will talk about those some other time.)

I felt alone. And this is one of the reasons I began to go to Wellspring (a cancer support centre) in March. I could find people who were going through what I was.

So I did my cancer lesson #3: Let Go (and Let God). As a result, I feel more at peace with the situation especially since I did not have to fight anymore. I could save that fighting spirit for the cancer cells within!

As for going hypo, it too will come to an end.

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