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  1. #1
    Join Date
    Sep 2006
    Location
    Central Indiana
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    6,034
    Quote Originally Posted by redrhodie View Post
    Oh, and I think the guidelines changed before then. Actually, I think they still have the old guidlines on the lab printout, which I need to tell my NP about.
    Yeah; a lot of doctors and labs don't use the new guidelines. It's frustrating. Even with the new reference range, some docs will tell you that while a TSH of either .3 or 3 is considered "normal," most of their patients feel at their best with a TSH closer to 1. Depending on a doctor's attitude, it may be up to the patient to insist that dosing decisions are based, not just on what's "normal," but on how the patient feels.
    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
    Aug 2005
    Posts
    4,516
    Yup. My endo is refusing to up my dosage (I will be looking for a new endo). My TSH is over 2, and went up to closer to 3 between bloodwork. She says "you can't titrate it that closely." ARGH!
    Most days in life don't stand out, But life's about those days that will...

  3. #3
    Join Date
    Sep 2006
    Location
    Central Indiana
    Posts
    6,034
    Quote Originally Posted by Blueberry View Post
    Yup. My endo is refusing to up my dosage (I will be looking for a new endo). My TSH is over 2, and went up to closer to 3 between bloodwork. She says "you can't titrate it that closely." ARGH!
    Good luck finding a new doc? Has the current doc asked you how you're feeling at that level? If the answer is "not great," I don't understand her opposition.

    I don't know that they appreciate the frustration of being dependent on a drug for nearly every bodily function. From sleep to pooping to libido, among many other things. As a patient, you just want to go back to taking "normal" for granted.
    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
    Feb 2008
    Location
    Edge of Colorado Plateau
    Posts
    701
    Blueberry...man that's got to be beyond frustrating. The doc taking into account how you are doing.
    Indy..I totally agree with you there.

    My update: At least it is postive. I told the doc what all had happened and how I was feeling. It did not make sense to him but the Assistant said to him in the office that even though my dose had been lowered, I was still not feeling great. Then she said that we want you feeling better. I agreed. Isn't that what we all want??? Anyway, I'm back up to my old 10mg dose. Both my husband and I hope this takes away all of my symptoms and I start feeling better soon. Not sure how long soon will be. They did say that if I was not feeling better in a months time, to go and get the bloodwork done. Then I guess I would see him at that point. He has added a CMP, a CBC, the TSH Antibody, in addtion to the normal thyroid panel. I am close on my weight. I feel like I have been eating house and home for a while just to get closer to my normal 140. I came in at 136. So I am still eating a little bit more than normal.

    Good luck to everyone. This is by no means any fun. Why can't it be simple? There needs to be more understanding with the whole Doc patient relationship and the thyroid for sure.

    Take care all,
    Red Rock

  5. #5
    Join Date
    Jun 2006
    Location
    Newport, RI
    Posts
    3,821
    So, I got my labs, and it looks like I have Hashimoto's (high levels of both antibodies). No big surprise, and actually a bit of relief to know it wasn't caused by the radiation treatments. My endo is on vacation, so I haven't heard from her. Also, my tsh was .19, so technically hyper, but I don't feel hyper, so I'm not sure if she'll lower my dose. I don't want to be overmedicated, but I feel good right now.

    I'm nervous about the increased risk of other autoimmune diseases due to Hashi's, especially Celiac Disease. (Ha ha, auto correct changed Celiac to celibacy. I hope I don't get that either). My half brother has it so, I know I'm at risk genetically. I'm not going to worry about it until it's a problem, but it will be in the back of my mind.
    '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.

  6. #6
    Join Date
    Sep 2006
    Location
    Central Indiana
    Posts
    6,034
    That's a bummer, Red. I hear you about the worry re: other autoimmune diseases. It's on my mind a lot.

    I'll be curious as to what your doc says. Two of the three endos I've talked to have indicated that I may have both Hashi's and Graves. For the time being, my current doc is still just focusing on my TSH levels and how I'm feeling. But they're right about the dx AND I start to have wild swings, then the easiest thing might be to treat with RAI, although that, too, can induce changes in the antibodies. I'm having a hard time getting my head around the transient nature of the various antibodies that can cause autoimmune related thyroid disease.
    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. #7
    Join Date
    Feb 2008
    Location
    Edge of Colorado Plateau
    Posts
    701
    Red- Sorry to hear the bad news on Hashimoto's. in the beginning, that was what thet thought I had until my symptoms changed and so did my bloodworm. I'm still not out of the woods yet. They are checking me for other things, such as Hashimoto's, too. I'm just hoping that with my dosage increase all of my adverse symptoms go away.

    Good luck. I understand where your coming from on the other autoimmune diseases. That is how I feel about all of it too.

    Red Rock

 

 

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