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  1. #31
    Join Date
    Feb 2008
    Location
    San Antonio, TX
    Posts
    755

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    Will do. Thanks for the advice.

  2. #32
    Join Date
    Feb 2008
    Location
    Edge of Colorado Plateau
    Posts
    701
    Well...I thought I would come by and let everyone know that my continuing saga is continuing. After a few months with the endo, there were no conclusive actions taken. My numbers have not soildified themselves. TSH is low at 0.01, T4 is 1.3 (normal) and T3 is 4.2 (high end of range but ok). He tested another immunoglobulin/antibody and it is 27.6 and 16% higher than normal.

    From the reading that I have done, to me, this looks like Grave's. The only possiblility is if the T3 continues and kicks over above the "normal level". Then my doc might do something. I don't know what else to do because my body has not committed itself, so it is making my life difficult to say the least. I do know that I have been becoming an insomniac and certainly more irritable, nervous, anxious..etc. Not until I stopped to think about it that it would be related to the thyroid. Oh joy. I have totally given up coffee. My exercise is not what it used to be. I'm lucky to walk for 4 miles these days. It's the high heart rate that scares me, so I don't want to push it . I hope that does not sound terrible. I want to be my normal self and be able to go exercise like I used to before I turned 40.

    Good luck to those in all of your processes. Red, I'm glad your on meds. Hope it all works out for you.

    That's my story at this point.

    Red Rock

  3. #33
    Join Date
    Jun 2006
    Location
    Newport, RI
    Posts
    3,821
    Quote Originally Posted by Red Rock View Post

    Good luck to those in all of your processes. Red, I'm glad your on meds. Hope it all works out for you.

    That's my story at this point.

    Red Rock
    Thanks Red Rock. I'm feeling great. I see how lucky I am to have a diagnosis. I feel for all of you who are struggling with this. I hope you all get properly treated. I didn't know how bad I felt until now that I feel good, so if you're aware something's wrong, you must really feel terrible. Don't give up.

    So here are some of the changes I've noticed already: I have more energy. Twice this week we've gone out after work (after commuting)! That's huge for me. My skin is super soft like a baby's. I'm getting visited by Mr. Sandman when I sleep, getting that little crust in the corners if my eyes. I don't think I've had that for years, and I don't know exactly what it means, but it seems like a good thing. I've stopped needing naps. My blood pressure is back to normal (it had been high recently). The depression is gone! My neck doesn't hurt anymore. I can sleep without socks. My hands are warm. I am happy again.

    The only thing left is for my hair to grow back. It sucks that I've lost so much, but if it didn't happen, I wouldn't have gotten diagnosed. It's also helping me gain compassion, so that's another silver lining.
    '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.

  4. #34
    Join Date
    Jun 2006
    Location
    Newport, RI
    Posts
    3,821
    Blueberry, I read on another thread that your appointment was today. How did it go?
    '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.

  5. #35
    Join Date
    Aug 2005
    Posts
    4,516
    Quote Originally Posted by redrhodie View Post
    Blueberry, I read on another thread that your appointment was today. How did it go?
    Thanks for asking I've been trying to figure out how to best express my frustration The new doc I saw is actually a 3rd year resident (DH googled her after I got home, frustrated). She talked a lot about treating the "whole person" not just the numbers, did no physical exam (including even feeling the thyroid) She listened to nothing I said about the correlation between my levels and how I'm feeling and, instead decided that I need therapy because I'm depressed (been there - not going on right now - or at least not to a serious degree) and a sleep study (no indication of sleep apnea other than thyroid related symptoms). I have nothing against either one of these things - they might be a good idea (I think most people could benefit from therapy) - but that's not why I came to her. There's a level that's not normal for me that could well be causing all symptoms. She said she wouldn't do anything to deal with whether it could be an autoimmune disorder unless my symptoms get a lot worse (she had mentioned that early on as a possibility). She couldn't tell me what levels she routinely treated. The person who made the 'scrip decision is her supervisor, who never saw me (she had to check with the supervisor to make sure she could medicate).

    The only good news is 1) I did manage to get a prescription out of her, despite her doubts that it will help (there's nothing to contraindicate it - and my ob-gyn - who listens better, has treated me for a long time and is awesome - recommended it) and 2) I managed to get an appt with my real doc for my follow up in 2 weeks. So - I'm supposed to take 1 25mg tablet for a week. If I don't feel better, bump up to 2 (50mg). I go back in just over 2 weeks.

    I really, really hope that if I make it all the way to medical school and become a doc that I'll not send patients home feeling like I do right now.
    Most days in life don't stand out, But life's about those days that will...

  6. #36
    Join Date
    Sep 2006
    Location
    Central Indiana
    Posts
    6,034
    Wow. I'm livid for you, Blueberry. That's just ridiculous. Can you talk directly to the supervisor?

    At least you did get a script, although I do wonder about the instructions to increase the dose after just two weeks. I can't remember how long it took for me to feel better, but I do know that at about the six week mark, I started to feel a bit hyper, so I have to wonder whether you feel the full effect of the dose at two weeks. If you do increase the dose, just be mindful of hyper symptoms (insomnia, anxiety, heart palpitations, increased appetite, diarhea, just to name a few).
    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

  7. #37
    Join Date
    Aug 2005
    Posts
    4,516
    Thanks, Indy. I'm actually supposed to increase after 1 week I didn't think that was enough time, but I'll only be at 50, so maybe it's OK. Ack. I'll probably talk to my regular doc about what happened.
    Most days in life don't stand out, But life's about those days that will...

  8. #38
    Join Date
    Sep 2006
    Location
    Central Indiana
    Posts
    6,034
    I'm having a hard time getting my head around your experience. I've found communicating with my own endo frustrating, too, and I've sometimes wondered what the heck they're teaching the about thyroid disease. One and two weeks seem like really short periods by which to assess how the drug is working. My testing is every six weeks at this point.

    Consider finding a new doc or having your family doc treat you.
    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

  9. #39
    Join Date
    Jun 2006
    Location
    Newport, RI
    Posts
    3,821
    Jeez! So frustrating. Changing doses after a week sounds contrary to everything I've read. At least you got the script. I hope it helps.

    I really get the sense we're on our own dealing with this.
    '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.

  10. #40
    Join Date
    Aug 2005
    Posts
    4,516
    Thanks And I agree we're mostly on our own.

    This was the stand in for my primary care (she was booked and I couldn't get an appointment with her). I see my regular primary care in 2 weeks. If I don't feel like she has a great handle on it, I'll self refer to an endo and see what happens there. Of course, the doc yesterday said she wasn't giving me any refills, but actually called in 11 refills of 30. So - at least I have more time to get things worked out and find a doc who will listen.
    Most days in life don't stand out, But life's about those days that will...

  11. #41
    Join Date
    Feb 2008
    Location
    Edge of Colorado Plateau
    Posts
    701
    Blueberry...gosh, what can I say. I feel for you. I have been on my own thyroid roller coaster now for two years. Only the last year dealing with an endo, who I seem to get a long with, which is nice. He has actually explained things to me so I understand, which is much better than what my regular doc does not do so well. When I say that you would be changing doses after a week, I was a bit shocked to say the least. All the reading I have done, no matter what your taking, seems to be about a month or more before you might "start feeling better." I hope your regualr doc can help you in the meantime while you look for someone else who will help you get better.

    My story...I spoke with my docs office today and my recent results suggest, I'm boarderline Grave's so I'm going back to the endo this week. So does anyone have any input they can help me out with in what my next best options are. Is it safe to assume that I would be put on meds? Since I'm still boarderline can I request meds so I can feel better? Or should I just sit tight and wait to see what happens when I visit the endo?

    Sending everyone postive energy...thoughts your way to help you all feel better.

    Red Rock

  12. #42
    Join Date
    Sep 2006
    Location
    Central Indiana
    Posts
    6,034
    Red Rock, if my experience with subclinical/mild Graves is any guide, there are a few ways to approach it. You can just wait and see if it worsens but otherwise do nothing; you can go on a minimal dose of am antithyroid med; or you can on a beta blocker to control your symptoms. I was not a candidate for the latter because my bp is low. I went with the second option, and I did get better in the sense that my hyper symptoms lessened, but it also put me into a hypo state, despite repeated dose reductions. I'm no longer on them, and we're waiting to see if I'm in remission. For the first few months after going off them, I was still mildly hypo, so I started taking a small dose of synthroid. I feel hyper again to dome extent and it's unclear whether I just need to reduce my synthroid dose or if I'm not really in remission. Basically, whatever route you take will require repeated bloodwork. It's been a frustrating journey to say the least.

    Do you have a definitive Graves' diagnosis? There are some diagnostics that I don't think you've had that you should arguably talk to your doc about. One is an ultrasound. That helps rule out cancer and nodules. Another is a radioactive uptake scan. For this test, they give you radioactive iodine and then take two different images of your thyroid and measure how much of the iodine the thyroid has used.

    Finally, if it is Graves, I would consult with an opthamologist to see if the disease is affecting your eyes. This is another effect of the antibodies present with Graves. They can attack both the thyroid and the eyes.
    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

  13. #43
    Join Date
    Feb 2008
    Location
    Edge of Colorado Plateau
    Posts
    701
    Indy, thanks for your response. I have had the uptake scan earlier this year with the endo. The rest has been blood work. From what you say, it sounds like the antithyroid med would be the best option. The endo and I had previously talked about putting me on a low dose of a beta blocker. I came home and read about them and thought no, that looks scary. Really what is finally happening, I think, is that the right tests have been done so that there is a proper dx. I really don't want to be wandering around like I am, feeling like I do. I have been an insomniac this summer, as well as, beeing really nervous, anxious and things like that. I'll repost after I visit with the endo this coming week.

    One other thing, has anyone with thyroid problems had other autoimmune problems too, like gluten/celiac disease?

  14. #44
    Join Date
    Jan 2012
    Posts
    96
    Yes, Hashimoto's and celiac. Autoimmune issues tend to travel in groups. unfortunately.

  15. #45
    Join Date
    Feb 2008
    Location
    Edge of Colorado Plateau
    Posts
    701
    Thanks, e3rdpower. I have since done some more reading on the net about the whole thyroid gluten connection. Since I am mild hyper/Graves, it makes me wonder whether I should go gluten free. I have not mentioned that my brother has gone gluten free and his symptoms have all cleared up. He has done no bloodwork and does not have any thyroid issues. I'm the one with thyroid issues. Lucky me. So I'm half thinking that I see how the visit goes this week and perhaps mention this to the endo and see what he says. Not sure if it would be better to have the thyroid sort of under control before looking at gluten stuff.

    Red Rock

 

 

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