Entry 14 : Hypothyroid treatment will be no panacea...

2000-Sep-12 : I met with Dr. DiBisceglie and discussed my hypothyroidism for the first time.

After a scant 15 minutes waiting in the lobby, and 15 minutes waiting in the office (grrr) I finally met with Dr. DiBisceglie this morning to discuss me and my thyroid (along with the rest of my treatment). He told me:

• About 5% of all patients on interferon treatment experience thyroid disease (with most of those being hypo, rather than hyper). Dr. DiBisceglie participated in a study of this many years ago and made it sound like he was part of the pioneers in getting this information known and published.
• TSH (the blood test gotten to check the thyroid) stands for Thyroid Stimulating Hormone, and is produced by the body (in the pituitary gland) to tell the thyroid to produce more hormones. This is why a high level of TSH indicates an underactive thyroid--if the thyroid isn't producing enough T3 and T4 hormones, the hypothallamus produces a drug which gets the pituitary to produce TSH to try and make the thyroid get its act together.
• When hypothyroidism kicks in because of the interferon, it typically rises quite quickly. I had thought that going from 7.335 to 9.128 in two weeks was a fast rise, but Dr. DiBisceglie mentioned a patient who had 7, then 14, then 104. So while I knew that the acceptable range was .35 to 5.5, apparently I didn't understand what part of the scale was severe. In other words, my TSH is not crazy high.
• Despite the above, having over 8 or 9 on the TSH test definitely warranted trying treatment.
• Sadly, the 'treatment' is to take pills which supplement the thyroid's hormone production. This is sad because it treats the symptoms, but does not in fact encourage the thyroid to increase production. In fact, Dr. DiBisceglie said that the majority of people who begin thyroid medication tend to stay on it for their whole lives--not because they need to in order to survive, but because they'd rather not have the side-effects of hypothyroidism return.
• If thyroid medication is continued for a long time, Dr. DiBisceglie believes that the thyroid does actually decrease in size and capability. 'A long time', however, is 10-15 years, not 6 months or a year.
• Thyroid medication takes 2 weeks to see full effect (and 2 weeks after stopping medication to see the body's 'natural' state). Because of this, the treatment is not done based on symptoms, but rather by slowly increasing the dosage until 'normal' levels of TSH are measured in the body.

What I've decided to do (and Dr. DiBisceglie said it sounded like a good idea) is to begin the treatment now on a low dosage (50µg/day of synthroid) and increase it until effective--the standard procedure. However, once the treatment ends, I'll try going off the thyroid medication and see a) how my thyroid does on its own, and b) whether or not I can live with how I feel if it happens to be less than perfect. I'm planning this because I really don't want to be on medication for my whole life (especially for a non-life-threatening disease) and I especially don't want to tell my thyroid it's OK to slack off.

The two most important downsides to all this as I see them are:

1. There isn't a cure for the disease, just the symptoms. I really thought that having been around so long that it was curable, and I could look forward to a month or two of treatment and then happy days.
2. If it does make me feel better, it won't be immediate, and possibly not even in 2 weeks. Since my next appointment with Dr. DiBisceglie isn't October 11th (when I find out the results of my Viral "has the treatment been effective?" Load test) it may be a more than a month and a half until the thyroid medication is properly dosed and I'm feeling better from it.

Separate from the thyroid, Dr. DiBisceglie was happy that my hemoglobin had gone from 10.2 to 10.8, but he is definitely hoping for it to go higher (as am I). I think there's not a lot of cause for alarm, since the two blood tests were only 2 weeks apart and the half-life of ribavirin is something like 14 days...so after 2 weeks the 1000mg/day I had been taking were possibly still affecting me then.

I've been having a little more energy, feeling better about things, but am still strongly controlled by sleep. I got 8 hours on Sunday (which was a shot night) and felt pretty bad for most of the day--nauseated in the morning, listless all day. 10+ hours is still my goal.

My company is sending me to talk at conference next week, and I'm excited for it. It will be a good motivator to show me that I can still getting on and living my life aside from the treatment. (Although I'm a little worried that I've been given only a week to prepare and practice for a 1-hour session starring...me. *gulp!*)

About a week ago I didn't take any Advil before my shot (which I frequently forget) and didn't take any afterwards, before going to bed (which I always do if I forget to take it before the shot). I actually remembered as I was falling asleep, but decided that it would be a good test to see how my body was handling the medication. Result: strong chills in the night. I may be well-accomplished at giving myself the shots, but my body still isn't used to getting them. Oh well...no worries.

I asked Dr. DiBisceglie (or rather, Lisa did) about the fact that after going on a walk for 2+ hours, my back muscles get destroyed for over a day. Specifically, she wanted to know if we should be worried about my rather sedentary lifestyle causing too much deterioration during the treatment. The doc said no...I'm young (27 doesn't feel young :) and there should be no medium- or long-term muscle problems after the treatment. I have to remind myself, though, that this is not a license to be lazy. I continue to motivate myself to do mild exercise just to make myself feel better later. (Lisa and I went on a 10-minute post dinner walk tonight...the first in a long time!) Hang in there, everyone!