Posted by Tabitha on December 31, 2005, at 13:36:09
I just had another awful doctor visit. So I've been taking 50 mcg cytomel for about a year now. I'm not doing this under a doctor's orders, and I don't know what my blood levels were before starting. I did have an Rx for 25 mcg from my old pdoc at one point though, and started off with old medicine from that Rx.
It's really helped me a lot, with fewer side effects than any psych med. This year has just been a huge improvement in my functioning. The most remarkable change is in my energy level and my sleep patterns. I'd struggled with low daytime energy and insomnia at night leading to a night-owl pattern for most of my life. Since I've been on this med, I don't even think about 'having energy' in the daytime anymore. It's just there. And I go to sleep at a normal hour in 20 minutes or so, and sleep well. It's just miraculous to me.
Also my thinking feels sharp again. I do brain-work in my profession so this is really important to me. So many psych meds make me feel stupider.
And my hair quit falling out and the texture improved. My hair had been falling out for 5-6 years and had gotten really coarse and awful.
I don't have any hyperthyroid symptoms except a tiny bit of increased irritability. But I asked my primary care doc for bloodwork (this was 6 months ago) and my free T3 level was way higher than normal, so she told me to just quit taking the cytomel, I don't need it. Well I insisted on an endocrinology consult, and it took 6 months to get in. He told me a slight variation on the same, it's dangerous, creates risk for heart arrythmia and osteoporosis, and told me to taper down to 12.5 mcg then come back in 3 months. Three months!
And since I didn't have bloodwork beforehand, I don't know that I'm not hypothyroid to begin with, and they can't possibly tell that based on my current blood levels. So it doesn't make sense to me to cut the dose in 1/4 then not be checked for 3 months.
I asked him what about all the symptoms that were improved, he said I need another specialist for that, he only does hormones. I asked what kind of specialist would that be, he said a psychiatrist. I said how could my hair falling out be a psychiatric symptom? He said he didn't know, I should ask my primary care about it. Well I've asked every primary care doc about it, they've not referred me to any specialist. I asked my ob/gyn if it could be hormonal, she said it's most likely thyroid.
And I told him I'd been Rx'd 25 mcg from my pdoc, he said that psychiatry and endocrinology disagree on using T3. Yet he's telling me to go to a psychiatrist. It's sort of comical.
So I looked up all the old research I'd looked up before starting, and it looks to me like using 25-50 mcg for bipolar and depression isn't that unusual. And I see stuff saying the risk of heart arrythmia and osteoporosis is controversial, and some says it only applies if you're hyperthyroid for long term, and since I don't have symptoms of hyperthyroid, despite the unusual blood levels, I don't really understand whether I'm at risk or not.
He took my pulse, seemed surprised that it's a perfectly normal 72. So he said the only reason I'm 'tolerating' this med so well is that I'm fairly strong.
Oh, and I asked couldn't I be monitored for osteoporosis and heart arrythmia, but he said it was still too dangerous. And he thinks I 'probably' haven't lost bone since it's only been a year. Well I've asked my doctor for bone density scans, which has been recommended to me anyway as a normal thing for an over-40 woman to get a baseline, and my doctor says no I don't need it since I don't have risk factors. Yet he's telling me it's a risk factor, and not ordering a test.
I guess I expected that he'd check my blood levels and switch me to a T4 or a T4/T3 combo, since I know endos don't use T3 alone. But he's just telling me to drop to 1/4 dose and go away for 3 months based on my current blood level.
I had also read that if you're on a T3 drug, you're not supposed to take the med on the day of the bloodwork, so I didn't really think it was that valid of a reading. I had taken it probably 2-3 hours prior to the test.
The most bothersome thing is neither doctor is willing to consider that I might actually be hypothyroid without this medication.
Now I'm confused about what to do. I could just ignore them and keep doing my own thing. I could go to a private lab and get my own bloodwork. I could go back to the pdoc who Rxd the 25 mcg and ask for advice and monitoring. I could go to a different GP I know of who's supposed to be progressive about thyroid and hormone stuff. I could call this one back and argue some more, and ask to come back earlier than 3 months.
The only thing I don't want to do is taper down to 12.5 mcg and stay there for 3 months without any further monitoring. I just can't see how that makes sense at all. I'm pretty mad that I waited 6 months and got the 15 minutes of face time and that was the whole response.
This med has really been life-changing for me. And I guess I'm just used to the way pdocs do things, where you weigh risks and benefits, and experiment and go with what works, and then try to offset the risks. All meds have risks, right?
It's just not making sense, yet I'm pretty upset by the visit. I don't like going against doctor's orders. I really am worried about giving myself osteoporosis. And I don't like knowing that this is on my health records.