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  1. #1
    Join Date
    Jun 2006
    Location
    Newport, RI
    Posts
    3,821
    Quote Originally Posted by indysteel View Post
    Thanks, ladies. Virtual hugs are most welcome.

    Red, I've been on 25 mg--I think the same as you. It's weird, because I actually feel okay these days. I don't sleep real soundly, and my HR has been elevated a bit with exertion. Resting HR is just fine. I haven't felt the crazy anxiety/irritability that I initially felt when first diagnosed. This is why I'm going to insist on a full blood panel. The antibodies associated with Graves can skew TSH; it's really better with autoimmune related thyroid disease to dose from Free T3 and Free T4 levels. I'd really like to see where those are. Of course, if my endo appreciates that distinction, she's never let on. Ugh, I need to find a new doc.
    Is 25 the lowest? I'm on 100 mcg.

    I know what you mean about the doctor. I'm just seeing an NP, and I know she doesn't know much about thyroid, but it seems like a crap-shoot with doctors anyway, and who knows if the next one will be better. I'm keeping my fingers crossed that I keep feeling well. My hair is still an issue, and that will be the thing that gets me to a specialist if it doesn't show some improvement in another month. Patience is required with thyroid problems even once your levels have normalized, and a bit of determination is needed just to get diagnosed. After that, I hear it gets better, so don't lose hope.

    At least you're not alone!
    '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.

  2. #2
    Join Date
    Sep 2006
    Location
    Central Indiana
    Posts
    6,034
    Yep, 25 mg is the lowest. What's so weird is that I am seemingly really sensitive to both drugs, even at really low doses I don't get it. That's why I want her to look at Free T3 and T4.
    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

  3. #3
    Join Date
    Sep 2006
    Location
    Central Indiana
    Posts
    6,034
    Insert stream of expletives. When I talked to my endo's nurse yesterday about getting a lab order that included more than just TSH, she said she'd talk to the doc and get back to me. Well, she just got back to me and it was clear from the response that even if I get the labs done, the doc isn't interested in using them for treatment purposes. So, what's the point? I told the nurse that I just didn't think the doctor and I are on the same page and that I was going to find a new doctor. I then (after I stopped crying again) left a message for my internal medicine doc for some additional referrals and asked for some help in the meantime sorting myself out (mostly because I anticipate that it will be a matter of months before I can see anyone). She offered to do that when I saw her in June and explained that I felt like my endo and I were just not communicating very well.

    I've really got to get it together though because as much as I find crying cathartic, I can't be doing it at work. I was lucky to be off yesterday for Columbus Day, but I can't have a repeat today.
    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
    Jan 2012
    Posts
    96
    So sorry that you're getting the run around. Free T3 and Free T4 along with antibodies are definitely what they need to look like. Hopefully your internist will order them for you, much sooner than June. It sure sounds like Hashi's.

  5. #5
    Join Date
    Sep 2006
    Location
    Central Indiana
    Posts
    6,034
    My problem with my endo's fixation on TSH is this: The antibodies at play in any form of autoimmune thyroid disease can skew TSH. So, it's important to look at Free Ts. It's not uncommon for TSH to be suppressed in Graves' patients even when their other values are ideal. But her nurse said something about how my disease was so "mild" that it wouldn't show on the Free Ts. That just doesn't make any sense. And if it does make sense, I'm just at a point--in terms of my lack of confidence--that I'll need to hear that from someone else.
    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
    Jun 2006
    Location
    Newport, RI
    Posts
    3,821
    I think this is a good thing, Indy. You gave this doctor a lot of time to try her way. Time to move on to someone who will listen and do the appropriate tests. At least you PCP seems helpful. Maybe once you get the referral, you can get on a call list for cancellations if you can't get an appointment soon.
    '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.

  7. #7
    Join Date
    Aug 2005
    Location
    Portland, Oregon
    Posts
    239
    I have been going back and forth with my pcp about my thryroid, for the past couple years. I was diagnosed with Hashimoto's by my previous doc. Besides his training (osteopath) he had to learn more about the issue when his wife was diagnosed. Turned out I was having same issues at the same time as his wife. The first few years working with him were wonderful. We had things mostly under control.

    Cue peri-menopause ..... hormonal changes, weight gain, serious illness, fibroid tumors requiring partial hysterectomy. all in one year. Caused some body changes that my thyroid didn't like. then my doc retired. Then my husband retired so had to change health care providers. Then I changed jobs and again a new provider. New doctor does not really understand thyroid stuff.

    I finally have an appt with an endo next week. One of the things both doctors recommended was to be wary of where on the internet I got my information from. Guess I won't tell them about the TE forums :-)

    They both have recommended the information found at http://www.thyroid.com/ and at http://www.mayoclinic.com/health/has...isease/DS00567
    Funny how that's where I got most of my info that they are disputing ... grrrr

    edit: link wrong for thyroid website above - should be http://www.thyroid.org/
    .org instead of .com - interesting difference

    I'll know more next week. Virtual hugs to everyone - this is no fun but let's work on it together :-)

    Edna
    Last edited by evangundy; 10-13-2012 at 08:39 AM.

 

 

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