Testing my limits

How often do I look at my box of pills and think 'what if I just threw them all away'? The answer is 'too often these days'.

Okay, I am human and even though I fill my pill box ever week, I am not perfect. Sometimes I forget to take some of my pills. I have to take pills twice in the morning and sometimes I miss the second set of morning pills. Those pills are ones which I take twice a day so if I miss half a day's dose every couple of weeks I figure I am okay.

But what if I skipped the ones I take once a day? I really make an effort not to. I have been known to wake up in the middle of the night (say hello to insomnia!) and check to make sure I have taken them all. I figure once, I could survive. But what if I just stopped them all?

The one pill I know I really need to take every day is my levothyroxine - which is my substitute thyroid gland. I know what happens if I forget that one. One day is fine, two or more days starts to cause problems. I once went on vacation and left my thyroid pills in my hotel in NY before flying to the Bahamas. I started to blow up like a balloon. These are important enough that I know if I ever forget them for some reason, most pharmacists will 'advance' you a few pills, especially if they are part of the same chain where you get your prescription.

I am tempted sometimes to stop taking one or two of them to see how much of an effect they really have on me. I have a weekly pain patch that has shifted from Thursdays to Monday nights after I have gone without it for a bit. Sunday night I was sick of the itching it was causing me so I yanked it off in the middle of the night and didn't put another one on until yesterday afternoon.

For some reason, I have felt like pushing my limits recently. Maybe its a phase. Maybe in some ways I am feeling better? I don't know. I just know I hate being dependent on a bunch of pills to survive.

A nice doctor appointment

Yesterday I met with my endocrinologist, a/k/a the thyroid cancer doctor. Last year was a horrendous experience.

I was very pleased on arrival to note that the idiot nurses manning the front desk at previous visits were no longer there. They forgot me last year, which added to my stress. I used to learn a lot about their personal lives as they chatted continuously at the desk instead of managing the patients. But this year, there were new nurses and they were nice. And they did not forget me.

I met with the doctor and we had a nice conversation. My numbers are where they are supposed to be, one is a little high which means my dose is too low (its backwards with thyroid numbers - more medication to reduce numbers) so my meds are tweaked. Which means more blood work in eight weeks and six months.

Next year I will see her again, unless there are problems with my new medication level and have an ultrasound to make sure there are no cancer cooties lurking around.

It was a nice doctor appointment, free of stress and all that. I can live with that. After cancer, all we can hope for is that the cancer cooties do not return.

Food for thyroid thought

In 1981, I had my thyroid removed. I have no idea what my thryoid numbers were then. I don't even know how much tracking they did of thyroid numbers anyway. I have never really understood thyroid numbers anyway. I know if your numbers are too high, you need to take take more to make them go lower.

Now this doctor explains (to smarter brains than me) about old levels (pre-surgery) and new numbers. I need to talk to my doctor. I have no idea what my old numbers were. I have no idea if they are buried in my medical records or just never recorded. And if they are buried in my medical records from 1981 they might as well have never been recorded because they are in a paper file in the medical archives which are in some 'other' building at the hospital and take a long laborious process to be retrieved.

This is a prime example of how the medical world  has changed in the past 30+ years. Back then, when I was young and had no idea about medical crap, we listened to our doctors and believed what they said. We didn't do any research because we believed what they told us. If we had questions, we might find a second opinion but probably not.

And also I have changed. At that young age (and if you want to know how old I am this year I am 37, last year I was 37, and next year I will be 37), I didn't really care about what doctors said because I was healthy damnit and in college and didn't really think about what it was like to be sick more than a cold.

But I digress. I need to print out that article and bring it with me to my next endocrinologist appointment which is sometime early in 2015. And I should probably make a note to myself on my calendar to remind myself to ask the doctor about it.

What I didn't know about clinical trials

I had never really wondered when clinical trials started or how we got to where we are with a dysfunctional system. Between my two recent posts on thyroid cancer and long term side effects of medications, I was doing some research and found this article talking about the history of Synthroid or levothyroxine as it is named now. Then I found this timeline which shows how the FDA didn't have as much authority until 1988 - just over 20 years ago.

I found several things surprising in this information:

- Medical doctors recognized thyroid issues a long time ago - late 19th century but it took another 60 years before they had a medicine to replace it.

- Some of the early medical treatments make my skin crawl - pig thyroids, vinegar, boiling oil, etc. YUCKY!

- Synthroid or now Levothyroxine (it took me a long time to learn to pronounce that hence my personal rule that you can't take any medicine or have any ailment unless you can spell and pronounce it) was unapproved for so long and that the doses were never tested until ten years ago. When I started taking Synthroid it was the only brand on the market. I was given a dose that was .200 mg (milligrams - 1000th of a gram) or 200 micrograms. My dose over time has changed from 200, to 150, 125, 137. But I know there was a time when as many variations were not available as for a while my endocrinologist had me taking half a pill on Sundays.

- Prior to 1962, drug companies only had to say a drug was safe. There was no regulation. If a drug was marketed before 1962, it was grandfathered into the system and no clinical trials were required. It was only after complaints that Synthroid went through clinical trials in 2000-2002.

I can also add that I was part of a lawsuit of Synthroid purchasers who were forced to pay high prices for it for years because it was the only one on the market - the manufacturer had monopolized the market and forced higher prices for it on to the consumer. I think I got nine dollars and change for this.

So now nearly 50 years later into clinical trials, and just over 20 years of FDA regulation we have a system which is over burdened and stressed. It hasn't taken that long for the system to fall apart.