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  • emmtee
    Post count: 148

    Sue’s last question got me thinking of a question of my own. For any of you who have had a thyroidectomy… When you visit your endocrinologist, does he/she still examine your neck? Mine did at my last visit, and she told me that she will continue to do so because it’s possible for thyroid tissue to grow back, and more likely for it to happen in patients who were hyperthyroid.

    I’m wondering if this is normal or if she’s doing this for me in particular because I had such a large nodule that was suspicious for cancer. It was benign, but it was a type of tumor that was encapsulated and is only considered malignant if the cells escape the capsule. The pathologists couldn’t find any that escaped, but with such a large tumor, my surgeon was a little concerned that something might have been missed and she wants me to have annual blood tests for a cancer marker anyway.

    Liz1967
    Post count: 305

    My endo was a bit clueless sometimes. Once she was feeling my neck and admitted she forgot I had had a TT! I have a nearly invisible scar. I see my internist’s nurse practitioner for labs. I really really do not anticipate my thyroid growing back! My surgeon was as meticulous for my Graves as he is for his thyroid cancer patients in getting all the tissue out. If residual thyroid tissue is a concern, I would think they would be doing an office ultrasound. Your internist will do neck palpation checking for enlarged lymph glands or things like lymphoma, nothing to do with thyroid.

    emmtee
    Post count: 148

    LOL! I’m quite sure my endo will never forget that I’ve had a TT. My case was quite memorable due to the size of my nodule. My surgeon actually gave me photos of my thyroid, and I’m confident that she got every bit of tissue that she possibly could. At the time we were all expecting the pathologist to find cancer, and the benign findings were quite a surprise.

    I see my endo again in a couple of weeks. :-)

    SueAndHerZoo
    Post count: 439

    Sorry it took me so long to reply to this thread! Yes, my endo would palpate my neck area every time I went for a follow up. A few times I had thought to ask him why but he was one of those non-stop chatterboxes and not only couldn’t I get a word in, but if I did manage to ask a question, I might get him off on another 20 minute dissertation. I now let my GP handle my blood tests and Synthroid… figured I don’t need an Endo if I have no thyroid.
    Sue

    emmtee
    Post count: 148

    Well, my endo checked my neck again at my last appointment, but she was more subtle about it this time.

    I don’t foresee a time when I’ll ever stop seeing my endo. We’re still trying to get my TSH into the normal range. The only time it’s been normal was the blood test 11 days after my TT. Before my surgery, I guess it wasn’t a big deal for it to be low, as long as my T4 and T3 were normal. Now that I don’t have a thyroid, she’s more focused on it. She says that the T4 and T3 can change throughout the day, so you can’t really go by those numbers. As long as the TSH remains suppressed, I’m still considered hyperthyroid, so she lowered my levothyroxine again. I’m down to 112 now from 175 after my thyroidectomy two years ago.

    Liz1967
    Post count: 305

    The average replacement dose of levothyroxine is 1.6 micrograms/kg/day. I always have to look up the conversion of kg to lb, can never remember my weight in kg! They talk about factoring in things like BMI, age and sex, but it remains a pretty good rule of thumb. I have always dosed by TSH as I have found FT4 to kind of do its own thing, not at all in sync with dose changes or TSH. My surgeon did my labs and dosing for first six months and he was spot on, whereas my endo was not much help.

    emmtee
    Post count: 148

    LOL! Well, using your formula I can see how they came up with my initial dose – it’s spot on. The dose I’m on now is about equal to my weight in kg. I actually asked my endo if it was weird that my dose was so low for such a large person, and she said that she has patients who are small who are on 300 mcg. You never can tell.

    AzGravesGuy
    Post count: 160

    I fired my endo before my TT. She was against it. With my eye involvment she still recommended a repeat RAI. Denied any connection but billed herself as a “thyroid specialist”.

    I have not needed the “expertise” of an endo since TT! Lol
    I had my neck U/S a few months after surgery to look around and nothing left but 4 parathyroids.

    FWIW, I found the more fat I lost after TT the higher dose of Synthroid I needed. Started at 212lbs, 40% fat and on 100mcg. Now I am 140lbs, 8% fat and on 175mcg. My MD said muscle uses T4 more than fat so using weight to dose can be problematic depending on body composition.

    I went from couch potato to fitness model with my TT. No one saw that coming. Hahaha

    Rob

    Liz1967
    Post count: 305

    Rob, that is really interesting and makes perfect sense actually. All about metabolism rather than weight. Even resting muscle burns calories. Maybe that is why they are figuring BMI into the formula.

    emmtee
    Post count: 148

    Rob, that’s very interesting. I’ve been wondering how levothyroxine needs might change with weight loss. So I could eventually settle into a dose of levothyroxine that put my TSH in the normal range, start to feel better, get active, lose weight, and then become hypo? ;) And they tell you that finding the right dose of levothyroxine after TT is supposed to be easier than finding the right dose of methimazole. 😆 My endo has told me that I have a difficult case. And that was before the 7 cm tumor :)

    Liz1967
    Post count: 305

    If weight loss moves tsh upward, just take more levothyroxine. With methimazole, you have a diseased thyroid chugging out thyroid hormone erratically. With levo, what you take is what you get, no thyroid to suddenly mess you up. My dose has been the same for four years, but my weight has never changed except when I take steroids, which is short term. Everyone tends to blame every bout of fatigue, headache, muscle pain, etc on thyroid, forgetting those things happened before Graves but tended to be ignored as most people do not feel totally wonderful every day! If I started focusing on a symptom, it took on a life of its own so I learned early to go by the numbers and not blame my normal for me allergies, headaches, etc on thyroid. So when I say I feel totally normal, I mean I feel exactly as I did preGraves, with my occassional migraines, joint pains, bouts of insomnia, dry skin, down days, etc., all normal for me!

    SueAndHerZoo
    Post count: 439

    Well said, Liz, and a great reminder for all of us. I just recently (three weeks or so) adopted the same concept….. not every little thing my body does can be attributed to my lack of thyroid, or my weight change, or my change in diet, etc. It MIGHT be one of those things, it might be a combination of all three, it might be the weather, or it might just be ME. I have started to “accept” that I’m not going to feel wonderful every week of my life.

    But, on the other hand, I still try to analyze and figure out what MIGHT BE causing symptoms if they seem to come out of the blue. I would love to be able to figure out which are things in my control and which are not (kind of like the Serenity Prayer, ” . . . . the wisdom to know the difference”).

    I can feel that my TSH level is moving again right now and will have blood drawn soon to figure out which way it’s going, and I think I have a hunch why it might be shifting, but rather than obsess on it or try to “fix it”, I’m just going to try to narrow it down to see if it’s something I can adjust, and if not, I’ll just adjust my Synthroid.

    Hope you all (or those of you in the states) had a nice Thanksgiving.
    Sue

    Kimberly
    Online Facilitator
    Post count: 4262
    Liz1967 wrote:
    If weight loss moves tsh upward, just take more levothyroxine.

    Just a note that for many who lose weight, lab tests confirm that a *reduction* in replacement hormone is needed. AZGravesGuy’s story was not just about overall weight loss – but also about adding a significant amount of lean muscle mass.

    Since the “rule of thumb” dosing recommendations deal only with weight, it would be very interesting to see further research on the affect of body composition on dosing requirements.

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