Doctor frustration

[WindingRoad]

First don't ever feel odd about asking your doctor questions. Any good clinician will be receptive and should not take these questions personally. No one knows you better than you so they need to know what you are thinking in terms of treatment too. It's treating the whole person not just their body.

Am I understanding that the blocking treatment means that your TSH is somehow ineffective at producing T3 and T4? Or something is possibly aberrant about the T3 and T4 making them ineffective?

[indysteel]

First don't ever feel odd about asking your doctor questions. Any good clinician will be receptive and should not take these questions personally. No one knows you better than you so they need to know what you are thinking in terms of treatment too. It's treating the whole person not just their body.

Am I understanding that the blocking treatment means that your TSH is somehow ineffective at producing T3 and T4? Or something is possibly aberrant about the T3 and T4 making them ineffective?

The blocking part of block and replace is the use of anti-thyroid meds to block the production of thyroid hormone. The drugs also help lower the antibodies that cause GD in the first place. In an effort to keep thyroid levels stable, some docs then add in a hormone replacement drug. In my case, such a drug would be used to keep me from going into a hypo state. Block and replace can also help patients from developing a resistance to the anti-thyroid meds. In the end, the approach often leads to more stability and, ultimately, to remission.

The standard wisdom that I've seen is that you use just enough anti-thyroid meds to keep Free T4 at or slightly above the mid-range. In my case, we're having a hard time finding a small enough dose to do that, which my necessitate the use of block and replace. This, of course, is my amateur opinion.

I do agree with you that a good clinician should be willing to answer my questions. My concern with my current doc is that she doesn't know the answers to my questions. Based on comments my doc has made in the past, it would appear that she's focused exclusively on my TSH levels. Once a patient is on meds, TSH is not a reliable number to look at. For a lot of GD patients, their TSH levels remain extremely low even after drug therapy. My understanding is that so long as their Free T4 and T3 levels are good, the therapy is working and they should feel relatively good. My original concern about my doc is that she doesn't seem to be looking at the appropriate lab values. How can she get me where I need to be if she doesn't even know what to look at? Ugh.

[WindingRoad]

I personally would start scheduling an appointment with another doctor. I've found if at all possible, I know it may be hard to find, that younger doctors are more willing to listen these days. I think it has to do with the ways medical schools have changed their approach to therapy and patient involvement. I hope you find some answers soon. It's not fun wondering what to do. Big hugs to you dear.

[indysteel]

Big hugs to you dear.

Thanks...and right back at you!

[indysteel]

Ugh; my doctor apparently doesn't want to try block and replace with me. Her reasoning--at least per her assistant--made no sense to me. She is of the mind that you only use B&R when levels are unstable. That's very inconsistent with what I'v read. You don't have to be a doctor to figure this out. If you can't keep a patient from going hyper, even on a very low dose of ATD, it makes sense to add in some synthroid (or the appropriate alternative).

I've sent a question about this to Elaine Moore's website, and I'll be curious as to what she says. In any event, I want a second opinion.

[redrhodie]

Yeah, I think at this point, you really need one. Listen to your gut, and find someone who is listening to you.

I sometimes watch a show on Discovery called "Mystery Diagnosis" and so often, the right doctor makes all the difference.

[indysteel]

I love that show. It makes me sad what some people endure though and how much still evades a ready diagnosis.

Elaine Moore (she's a Graves expert) answered my question and fundamentally questioned whether I need to be on meds at all. When I first got diagnosed, it was for subclinical/mild Graves. Because of my family history, my exercise intolerance, and my low blood pressure (which made a beta blocker a bad idea) we opted to medicate. Maybe that was a mistake. I'll try the dose reduction and a second opinion and see where I am.

And I need to calm down. I'll figure all this out. Getting worked up is not going to help.

[redrhodie]

Time for new shoes.

[indysteel]

Time for new shoes.

LOL. I do want a new pair of Keen Mary Janes. Can I eat some cake, too?

[Catrin]

LOL. I do want a new pair of Keen Mary Janes. Can I eat some cake, too?

Yes, you can have some cake. Take that, thyroid

[WindingRoad]

It's really odd because not even two hours ago I was looking at some cute Keen MJs in black. No joke :-)

One day at a time.

[jessmarimba]

A little late to the discussion, but I know here it's pretty easy to get a second opinion on things since referrals are not required in Colorado (as long as your insurance is ok with it. And when I called my insurance, they said it's up to the state). I'm eventually going to be paying a big chunk for my recent back appointment because they took all new x-rays, which I hadn't budgeted for (deductible just reset Feb 1) but they won't question the appointment itself. Balance billing is also illegal here.

[redrhodie]

Have you had any luck with this, Indy? Been wondering how you're feeling.

[indysteel]

Thanks for asking, Red. I have an appointment with my endo in a few weeks. It was originally at the end of this month, but she had to reshedule. Depending on how the appointments goes, I may decide to get a second opinion. She did agree to cut my dose of anti-thyroid meds. While I feel okay (I'm still mildly sluggish) I tend to think it's time to ween off of them. I'm not sure I should have ever been on them in the first place. I have a better understanding of that now.

[redrhodie]

Is the sluggishness the main symptom? Was that the original reason you thought there was something wrong? Did anything improve with the meds?

Maybe you should keep a journal to see if you can find patterns or triggers.