Welcome guest, is this your first visit? Click the "Create Account" button now to join.

To disable ads, please log-in.

Shop at TeamEstrogen.com for women's cycling apparel.

Page 1 of 6 12345 ... LastLast
Results 1 to 15 of 80
  1. #1
    Join Date
    Sep 2006
    Location
    Central Indiana
    Posts
    6,132

    Doctor frustration

    To disable ads, please log-in.

    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.
    Live with intention. Walk to the edge. Listen hard. Practice wellness. Play with abandon. Laugh. Choose with no regret. Continue to learn. Appreciate your friends. Do what you love. Live as if this is all there is.

    --Mary Anne Radmacher

  2. #2
    Join Date
    Jun 2006
    Location
    Newport, RI
    Posts
    3,834
    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.
    Last edited by redrhodie; 02-21-2012 at 07:40 AM.
    '02 Eddy Merckx Fuga, Selle An Atomica
    '85 Eddy Merckx Professional, Selle An Atomica

    '10 Soma Double Cross DC, Selle An Atomica

    Slacker on wheels.

  3. #3
    Join Date
    Sep 2006
    Location
    Central Indiana
    Posts
    6,132
    Quote Originally Posted by redrhodie View Post
    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.
    Live with intention. Walk to the edge. Listen hard. Practice wellness. Play with abandon. Laugh. Choose with no regret. Continue to learn. Appreciate your friends. Do what you love. Live as if this is all there is.

    --Mary Anne Radmacher

  4. #4
    Join Date
    Mar 2008
    Posts
    2,738
    (((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!

  5. #5
    Join Date
    Sep 2006
    Location
    Central Indiana
    Posts
    6,132
    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.
    Live with intention. Walk to the edge. Listen hard. Practice wellness. Play with abandon. Laugh. Choose with no regret. Continue to learn. Appreciate your friends. Do what you love. Live as if this is all there is.

    --Mary Anne Radmacher

  6. #6
    Join Date
    Dec 2005
    Location
    around Seattle, WA
    Posts
    3,250
    (((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.
    Beth

  7. #7
    Join Date
    Sep 2006
    Location
    Central Indiana
    Posts
    6,132
    Quote Originally Posted by bmccasland View Post
    (((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.
    Thanks for that sound advice; I was already hoping to get my hands on all of them. I have the last set, but not the first two. Is there a polite way to get them?

    My doc did agree to order a broader set of labs, so I'll either have to talk to her about this issue when my results come in or when I see her in March. Now I just need to find another endo.
    Live with intention. Walk to the edge. Listen hard. Practice wellness. Play with abandon. Laugh. Choose with no regret. Continue to learn. Appreciate your friends. Do what you love. Live as if this is all there is.

    --Mary Anne Radmacher

  8. #8
    Join Date
    Sep 2006
    Location
    MS
    Posts
    221
    You are correct that in most cases a Free T4 is best for monitoring treatment. Sometimes in conjunction with TSH. It may be that FT4 is not immediately available at the lab where your testing is performed, which may influence her decision to order it. I would have a frank discussion with her about your concerns and let her know you've been doing some self education on the subject. A good physician will not feel threatened and actually respect your desire to be a proactive participant in your care. As far a getting copies of your labs, you should only have to sign a release to get them either personally or sent to another physician.
    Good luck!
    "Only those who dare to fail greatly can ever achieve greatly" (Robert F. Kennedy)

  9. #9
    Join Date
    Oct 2010
    Location
    Denver, CO
    Posts
    583
    Indy, I just ask for copies of my lab reports in a friendly manner. I don't even offer an explanation for why I want them. The office personal have always accommodated my requests with no questions asked.
    LORI
    Pivot Mach 4 / WTB
    Updated Vintage Terry Symmetry / Bontrager InForm RL WSD

  10. #10
    Join Date
    Sep 2006
    Location
    Central Indiana
    Posts
    6,132
    Thanks everyone!

    Quote Originally Posted by jusdooit View Post
    You are correct that in most cases a Free T4 is best for monitoring treatment. Sometimes in conjunction with TSH. It may be that FT4 is not immediately available at the lab where your testing is performed, which may influence her decision to order it. I would have a frank discussion with her about your concerns and let her know you've been doing some self education on the subject. A good physician will not feel threatened and actually respect your desire to be a proactive participant in your care. As far a getting copies of your labs, you should only have to sign a release to get them either personally or sent to another physician.
    Good luck!
    She's tested for FT4 before so I believe it's available. My last two labs show that it's low normal. My TSH is high normal so my assumption is that I'm oversuppressing. I may need to cut the dose again (and i had to talk her into the last cut). My dose is already so low that I have to wonder whether I need it all or am a candidate for block and replace.
    Live with intention. Walk to the edge. Listen hard. Practice wellness. Play with abandon. Laugh. Choose with no regret. Continue to learn. Appreciate your friends. Do what you love. Live as if this is all there is.

    --Mary Anne Radmacher

  11. #11
    Join Date
    Jan 2012
    Posts
    106
    Agreed for sure on copies of your labs. I keep them all. Also make sure to ask for Free T3, as that is the active thyroid hormone. Some of us (I am one) do not convert T4 to T3, so we have to take a combination thyroid replacement. (I am on both Synthroid and Cytomel) It is very frustrating, as so many endo's are not versed in optimal thyroid treatment, especially for athletes.
    Good luck and take care.

  12. #12
    Join Date
    Feb 2008
    Location
    Edge of Colorado Plateau
    Posts
    702
    Just wanted to give you my 2 cents worth. I can understand your frustration, as that is how I have been feeling with my situation. I felt like since I had this thyroid thing, that I had to be better educated than the doc. However, now that I am with an endo who, I think is super educated and seems to understand everything. (He should with a Ph.D and FACE qualifications) Perhaps I will get real results.

    As far as you are concerned, I would go with what everyone has suggested. Keep a record of all of your blood draws and results through time. Yes, its the FT3 and FT4 that show what is and is not happening in the thyroid. I have had to go back and reread some of my med tech books to get a better understanding of all of this. If your intrested look at a Clinical Chemistry book. It might tell you more than you want to know.

    I like your idea of getting a second opinon as well as trying to talk to your endo in a reasonable manner.

    Hope it all goes well and you can get some resoution.

    Red Rock

  13. #13
    Join Date
    Sep 2006
    Location
    Central Indiana
    Posts
    6,132
    Quote Originally Posted by Red Rock View Post
    Just wanted to give you my 2 cents worth. I can understand your frustration, as that is how I have been feeling with my situation. I felt like since I had this thyroid thing, that I had to be better educated than the doc. However, now that I am with an endo who, I think is super educated and seems to understand everything. (He should with a Ph.D and FACE qualifications) Perhaps I will get real results.

    As far as you are concerned, I would go with what everyone has suggested. Keep a record of all of your blood draws and results through time. Yes, its the FT3 and FT4 that show what is and is not happening in the thyroid. I have had to go back and reread some of my med tech books to get a better understanding of all of this. If your intrested look at a Clinical Chemistry book. It might tell you more than you want to know.

    I like your idea of getting a second opinon as well as trying to talk to your endo in a reasonable manner.

    Hope it all goes well and you can get some resoution.

    Red Rock
    Can I come to Colorado and se your doc? Maybe he'll give us a discounted rate!

    I'm starting to learn what I think I need to know. Elaine Moore's website has been a big help in understanding not just my labs, but where I want my labs to be. I did get my blood drawn today and should have the results in 48 hours or so. How my doc responds to them--assuming they're "off"--will be telling.
    Live with intention. Walk to the edge. Listen hard. Practice wellness. Play with abandon. Laugh. Choose with no regret. Continue to learn. Appreciate your friends. Do what you love. Live as if this is all there is.

    --Mary Anne Radmacher

  14. #14
    Join Date
    Nov 2009
    Location
    Indianapolis, Indiana
    Posts
    10,952
    {{{Indy}}} Nothing constructive to say, just sending you good thoughts and hopes this eases soon. I've never had a question about getting copies of my test results.

  15. #15
    Join Date
    Sep 2006
    Location
    Central Indiana
    Posts
    6,132
    Well, labs suggest that I'm still oversuppressing, i.e., the anti-thyroid drugs are putting me into a mildly hypo state. That, unfortunately, is no better for me, especially as it relates to my eyes. My doc asked me to take my dose down again (to 2.5 mg every other day). That's a very minor reduction in my dose (I'm currently alternating between 2.5 and 1.25 mg daily), and I'm not all that confident it's going to do the trick. So, I left a message with my doc's administrator to discuss the possibility of using a block and replace technique. Per that technique, I'd continue to take an anti-thyroid med, but I'd supplement it with a small dose of synthroid or the like. Not only would it get my thyroid levels to a better state, but I've read that it can also be helpful for purposes of remission (which is my ultimate goal). If she's receptive to that, great. If she's not, I'm definitely going to seek a second opinion.
    Live with intention. Walk to the edge. Listen hard. Practice wellness. Play with abandon. Laugh. Choose with no regret. Continue to learn. Appreciate your friends. Do what you love. Live as if this is all there is.

    --Mary Anne Radmacher

 

 

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •