Doctor frustration

[indysteel]

I'm so frustrated right now. While I was in the process of getting diagnosed with Graves' Disease, I read more than a few accounts online of patients' frustrations with their doctors--GPs and endos alike. Perhaps because of that, I've been pretty insecure about my own care.

It turns out my insecurity is arguably well founded. My endocrinologist and I have been playing around with the dosage of my anti-thyroid medicine over the past number of months. I'm due to get my blood drawn this week to check my levels. Her lab order only covers TSH (thyroid stimulating hormone). Well, in an effort to educate myself about the disease, I've recently learned that TSH is a really unreliable marker once meds are started and that Free T4 (and to a lesser extent Free T3) are what really need to be examined.

So, that bit of information really has me worried that my endo has no clue how to treat GD--at least with meds. What to do about it? As it turns out, I've felt really off the last few days and I've wondered if I'm either over or undersuppressing. I made a call to the endo's office and talked to her nurse about how I'm feeling and whether it warrants expanding the lab order. She's going to talk to the doctor about it. I hope that I can at least get a broader test on that premise.

But the larger issue remains. I have an appointment with the endo in late March and will likely use that as an opportunity to discuss her approach to labs--hopefully in a diplomatic way. But should I even keep that appointment or is it time to simply start over? That's a difficult proposition in some ways because Indianapolis isn't crawling with endos who specialize in thyroid disease. Those that do are often difficult to see. But by the same token, it's very difficult to put herself in a potentially adversarial position with your doctor. I'm just not sure how to handle this. I have thought about talking to my GP about this, but she more or less gave me an incorrect diagnosis when this first started so I'm not sure she'd be much help.

I'm partly venting here, but if anybody has any suggestions for how to deal with my situation, I'd really appreciate it.

[redrhodie]

Have you gotten a second opinion? I think that will ease your mind, and if the new treatment plan suggestion is very different from your current one, you'll have options.

I really hope you figure it out, and get it under control soon!

ETA all the literature I've read says doctors should be okay with your seeking a second opinion.

[indysteel]

Have you gotten a second opinion? I think that will ease your mind, and if the new treatment plan suggestion is very different from your current one, you'll have options.

I really hope you figure it out, and get it under control soon!

Yes...that arguably seems to be in order. I'll be honest that I don't really know how one goes about doing that with an insurance company hanging over your every move. I'm really intimidated by the entire world of health care.

[Becky]

(((Indy)))

It has been my experience with my own endocrinologist and NP that they're willing to engage in discussions when I ask questions or push back a little. Don't be afraid to respectfully question why she's doing or not doing something. I think you're on the right path with self-educating and with questioning the lab order you've received.

If it were me, I'd keep the March appointment, especially since you're feeling "off" and it could take months to get an appointment with a new doctor.

As for the second opinion: I've never done it myself, but your insurance company may have a program for second opinions. It might be worth asking...

Good luck!

[indysteel]

Thanks, Becky. My boss and I just discussed this, too. He's not a medical expert or anything, but we share the same insurance, so he at least understands things from that perspective. He suggested that I keep the March appointment and that, in the meantime, I make an appointment with a second doc, too. I would like to give my doc a chance to discuss this with me, hopefully in a non-confrontational way. I certainly don't consider myself an expert on the thyroid, but I've read enough at this point to have a feel for some of it. I just want to feel secure that we're looking at the right lab values.

[bmccasland]

(((Indy))) - when you go for the 2nd opinion, make certain you take copies of your lab results. That will help Doc #2 see what you've had done.